2 0 1 5 Vo l u m e 1
PENNSYLVANIA
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IN THIS ISSUE
LUPUS RESEARCH
INSTITUTE
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The Newsletter of the Lupus Foundation of Pennsylvania
LUPUS RESEARCH INSTITUTE
LIVING LUPUS
Page 8
LUPUS NEWS
AROUND PA
Page 10
LIFE WITH LUPUS
Page 14
COUNTY
REPRESENTATIVES
Page 18
SUPPORT GROUPS
Page 19
Advocating for Access to Medications
April 27, 2015
As a member of the Lupus Agencies of NYS,
the S.L.E. Lupus Foundation signed two
Memorandums of Support for legislative
Acts that could help patients gain easier
access to the medications their healthcare
providers prescribe.
•Working to Stop Step Therapy/First Fail
Policies-- The S.L.E. Lupus Foundation is
among 30 professional and patient groups
to sign the Memorandum of Support
for NYS Assembly Act 2834 | Senate Act
3419-A to amend the insurance law in
relation to Step Therapy/First Fail policies
that require a patient to exhaust the least
expensive drug options before insurers
will cover more expensive treatment
options. The legislation would ensure
that the healthcare provider can easily
override these types of restrictions from
the insurer and limits how long the
patient must wait before being covered for
more expensive options.
•Supporting Anti-Mandatory Mail Order
Drug Requirements-- Along with the
other members of Lupus Agencies of
NYS, the Foundation also submitted
the Memorandum of Support for NYS
Assembly Act 6194 | Senate Act 2530
to amend the insurance law to have the
option to purchase prescription drugs
from a local in-network pharmacy and
not forced to receive drugs through mail
order.
- See more at: http://www.
lupusresearchinstitute.org/lupusnews/2015/04/27/advocating-accessmedications#sthash.C6dE5PX3.dpuf
*NYS=New York State
2
LUPUS FOUNDATION
OF PENNSYLVANIA
Landmarks Building
100 West Station Square Drive
Pittsburgh, PA 15219
412-261-5886 • 1-800-800-5776
Fax: 412-261-5365
Email: [email protected]
Website: www.lupuspa.org
PRESIDENT
Donna Polito
VICE PRESIDENT
Stephen Hutzelman, Esq.
SECRETARY
Gail Vandergrift
FINANCIAL CHAIR
John M. Yanak
BOARD OF DIRECTORS
Don Bell
Melissa Franko
Linda Kostyak PhD
Thomas Miller
Karen Pool
EXECUTIVE DIRECTOR
Lori J. McCann
BRANCH COUNCIL
Elaine Heufelder
Arthur Rooney, II, Esq.
John Vento
STAFF
Marian Belotti
Nancy Mimless
Shelly Tonti
OFFICE HOURS
Monday - Thursday
9am - 5pm
We say goodbye to Debbie Nigro…
Last November marked a significant yet bittersweet change for the Lupus Foundation of Pennsylvania. With great sadness, we said farewell to our Executive Director, Debbie Nigro, who retired after leading the organization for over 25 years.
Deb was responsible for not only the day-to-day activities of an ever-growing
agency, but also pulled together the Health Agency Coalition, secured sponsors to
develop major fundraising events, acted as liaison with other groups locally and
nationally such as the Lupus Research Institute (LRI), the Alliance for Lupus Research, and SLE Lupus Foundation, and in 2000, was instrumental in forming and
governing the state agency. Deb was respected and loved by the staff, board, and
membership. Maybe even more importantly, Deb was known and admired by the
community at large; it was often her personality, demeanor, and dedication that
gave the LFP credibility and likeability. She will be missed by all.
And welcome to Lori McCann…
Fortunately, the transition was smoother than we thought it would be as we were
able to bring back an old friend, Lori McCann, to serve as the new Executive Director. Lori worked as the Development Director for the LFP from 2005 through
2009 when she left for a position with the Pittsburgh Symphony Orchestra and
later with the Crohn’s and Colitis Foundation. Lori’s time away from the LFP has
given her a great deal of experience and knowledge that she has already begun to
use in restructuring and building the organization. Her enthusiasm is contagious!
We look forward to her leadership and guidance.
URGENT
2015-2016 PENNSYLVANIA
STATE BUDGET
At this time, funding for the Lupus Foundation
of PA has been eliminated (zeroed out) from the
2015-2016 State Budget.
In the past, the Foundation received state funding making it possible to
provide patients and families across PA with professional information,
education programs in the community, support services and more.
LEGISLATORS TELL US THEY ARE NOT HEARING FROM THOSE AFFECTED
BY LUPUS. We urge you to contact your respective legislators, in their
local and/or Harrisburg state offices, to convey your concern and the
necessity in continuing this funding.
A complete listing of Legislator names along with contact information can
be found at www.legis.state.pa.us/index.cfm.
The PA Lupus News, a publication of the Lupus Foundation of
Pennsylvania.
Editor: Marian Belotti
We welcome any subscriber who would like to contribute an article of
special interest.
Articles published in all newsletters are of an
informative nature and not meant for self diagnosis and/or treatment,
nor do they necessarily reflect the views of the Lupus Foundation of
Pennsylvania. Lupus varies among patients and medical management
must be individualized. If any article stimulates a quest for further
information, we advise that you consult with your personal physician.
For your convenience this link and links to our Legislative letter can be
found at www.lupuspa.org.
So, please contact your local Representative and Senator and ask him or
her to be sure…
Lupus awareness and education in PA depends on your voice.
3
QUICK AND EASY WAYS TO SUPPORT THE LUPUS FOUNDATION OF PENNSYLVANIA
MATCHING GIFTS
Here is a simple way to make your donation go further. Talk with
your company about their matching gifts program. Many companies will match dollar for dollar or .50 cents to every dollar of any
donation an employee makes to a non-profit organization. Human
Resources will typically be able to provide your companies policy
and details. This is an easy way to increase your donation without
it hitting your pocketbook. If you need clarification contact the
foundation office at 412-261-5886.
40TH ANNIVERSARY DONATION
2015 celebrates the 40th Anniversary of the Lupus Foundation of
Pennsylvania. To commemorate this milestone and to ensure that the
LFP remains strong for the next 40 years. Visit our website at https://
lupuspaorg.presencehost.net/help/40th-anniversary-appeal-donation.
html - Fast. Easy and Secure.
GOODSHOP.COM
Use goodshop.com for your online purchases and a percentage of
your purchase will be provided to the LFP
GOODSEARCH.COM
This donation won’t cost you a cent! Simply utilizing www.goodsearch.com as your search engine brings about a donation to The
Lupus Foundation. You can even track how much money your
online searching has donated to the organization.
BE BRAVE BRAVELETS (bracelets)
Looking for a fun way to show your support for the Lupus Foundation of PA and to provide lupus awareness? Visit https://www.
bravelets.com/bravepage/fighting-against-lupus and check out the
orange “be brave” bravelets. $10 of each bravelet purchased will be
donated to the LFP. You may choose from several different designs
to reflect your own personal style.
Please share this information with your friends and family so that
we may continue our mission to promote lupus awareness, education, service and research for lupus patients.
Aromatherapy For Pain Relief
Learn which scents are most effective for pain relief and relaxation.
By Mary Margaret Chappell
Recent studies corroborate the use of aromatherapy for pain relief.
“Aromatherapy is effective because it works directly on the amygdala,
the brain’s emotional center,” says Mehmet Oz, MD, professor of
surgery at Columbia University Medical Center in New York City.
“This has important consequences because the thinking part of the
brain can’t inhibit the effects of the scent, meaning you feel them
instantaneously.” Of the many uses of aromatherapy, pain relief is
only one; anxiety reduction and rejuvenation are other common
objectives.
Dr. Oz, a cardiovascular surgeon, studied aromatherapy to find
alternative methods to expedite recovery time and reduce anxiety in
heart patients. Dr. Oz and his collaborator, clinical aromatherapist
Jane Buckle, PhD, recommend using 15 drops of an essential oil, such
as lavender, chamomile or eucalyptus, diluted with 1 oz. (2 Tbsp.) of
a “carrier” or neutral oil, such as almond, avocado or jojoba, dabbed
directly on the skin. This means you literally have scented relief on
you when you need it, says Dr. Oz.
Alan Hirsch, MD, neurologist at the Smell and Taste Treatment and
Research Foundation in Chicago, believes you don’t have to limit
yourself to essential oils. Limiting the length of your exposure to
certain scents, however, will ensure they remain effective. “Shortterm exposure is key because people stop responding to scents after a
few minutes.
To use aromatherapy for pain, relaxation, and rejuvenation, Drs.
Hirsch and Oz recommend trying these scents.
relax: vanilla. In the Columbia University Medical Center study,
subjects who smelled vanilla while completing stress tests had more
stable heart rates and blood pressure readings than those who took
the tests in an unscented environment.
Try: Place a few drops of vanilla extract onto a handkerchief and
carry it with you throughout the day.
recharge: peppermint, jasmine, citrus. These scents make you
feel more awake. “Even though these scents are pleasant, they act as
mild irritants and the effect is similar to that of smelling salts,”
explains Dr. Hirsch.
Try: Sprinkle a few drops of the essential oil of your choice in a
candle diffuser, or dilute two drops in 1 tsp. of avocado or almond
oil, then rub it onto the back of your hand.
relieve: green apple. “We found that the smell of green apples
reduced the severity and duration of migraine headache pain and
may have a similar effect on joint pain,” says Dr. Hirsch. “The scent
seems to reduce muscle contractions, which are the main cause of
pain in migraines.”
Try: For aromatherapy pain relief, eat a green apple for a snack or
bathe with green apple bath salts.
4
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BOOK CORNER
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[email protected]
COUNTIES SERVED
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Potter • Venango • Warren
Harrisburg Branch
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[email protected]
COUNTIES SERVED
Adams • Berks • Columbia • Cumberland
Dauphin • Franklin • Fulton • Huntingdon
Juniata • Lancaster • Lebanon • Mifflin • Montour
Northumberland • Perry • Snyder • Union • York
Pittsburgh Branch
Landmarks Building,
100 West Station Square Drive
Pittsburgh, PA 15219
412-261-5886 or 1-800-800-5776
[email protected]
COUNTIES SERVED
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COUNTIES SERVED
Bradford • Carbon • Lackawanna • Lehigh
Luzerne • Lycoming • Monroe • Northhampton
Pike • Schuylkill • Sullivan • Susquehanna • Tioga
Wayne • Wyoming
WHEN SOMEONE YOU LOVE
HAS A CHRONIC ILLNESS
HOPE AND HELP for THOSE PROVIDING SUPPORT
By Tamara McClintock Greenberg, Psy.D.
First, the GOOD NEWS: We are all living longer lives.
Now, the BAD NEWS: We are all living longer lives.
Dr. Tamara Greenberg offers hope and practical advice to those impacted by a loved one’s illness with this new book. She provides easy
to understand explanations for complicated feelings and behaviors
and offers pragmatic strategies for coping effectively and sering your
loved one in this time of need.
LEARN
• How to talk to someone who is ill
• What not to do
• How to address your loved ones who aren’t taking care of themselves
• How to help someone in physical pain
• And MORE!
ABOVE ALL, Dr. Greenberg delivers important tools for managing
the normal anxiety we all feel when someone we love is ill.
155 pages, 2012
ISBN 978-1-59955-939-1
www.CEDARFORT.COM
5
LUPUS RESEARCH INSTITUTE
LRI Grant Leads to New Results Offering Major New
Direction for Lupus Research
January 20, 2015
Newly published NIH-funded research stemming from earlier
work funded by the Lupus Research Institute discovered that the
protein PTEN known to stop tumors from forming also helps
prevent autoimmune diseases by stopping the immune system
from reacting. The recent work provides a new direction for
research into better treatments for lupus and other autoimmune
diseases.
Dr. Hongbo Chi at St. Jude Children’s Research Hospital explains
how the initial study funded by an LRI Novel Research Grant
opened the door to his current work:
“We were able to identify the molecular pathways that impact
the function of regulatory T cells (Tregs). Tregs are a unique
population of white blood cells that helps to maintain immune
system balance and keep inflammation in control. Loss of function
of Tregs has been implicated in the development of lupus, but the
control mechanism has been elusive.” Until now.
"In humans we know that loss of PTEN leads to tumors. This new
study highlights another role and shows that PTEN is also crucial
for proper functioning of regulatory T cells and prevention of
autoimmune diseases," said Dr. Chi. "In mice, the loss of just one
copy of the PTEN gene in regulatory T cells is sufficient to set the
stage for autoimmune problems."
Congressional Lupus Caucus Update
Andrew W. Callahan, Health Staff for Representative Thomas J.
Rooney (R-FL)
Lupus has some strong champions on the Hill – the Congressional
Lupus Caucus -- a forum for representatives and their staff to
engage in a dialogue to improve the quality of life for people with
lupus and their caregivers.
"There are few opportunities for Congress to shed their party ties
to unite on one issue, but the Lupus Caucus is one," he continued.
"Tom and the other Caucus co-chairs are very encouraged by the
support Congress has shown for lupus patients with the legislative
initiatives like the 21st Century Cures."
Show your support for the Caucus with a Facebook Like!
House staffer Andrew Callahan explained what it means to his
boss, Caucus co-founder Representative Thomas Rooney.
Visit LupusTrials.org to learn more about the lupus clinical trials
that might be right for you or a family member.
"Tom's cousin died of lupus in her early 30's. Her death greatly
affected Tom which is one reason he wanted to start this Caucus,"
Callahan said. "He hopes the Caucus can be a useful resource to
lupus patients across the country."
Lupus Research Institute
330 Seventh Avenue, Suite 1701
New York, NY 10001
T: 121.812.9881
F: 121.545.1843
[email protected]
Callahan reported the tremendous growth since the Caucus was
first launched in 2012 with over 40 members from the House of
Representatives.
© 2014 Lupus Research Institute. All Rights Reserved
continued on next page
6
LRI Research Hits the Bullseye - Finds Target That Causes
Bleeding Complication of Lupus
January 14, 2015
Newly published research funded by the LRI has identified the
exact cell autoantibodies target to cause dangerous blood clots in
people with lupus.
to on the platelet. Once the receptor on platelets is located and
characterized, researchers may be able to create targeted treatments
that stop the autoantibody complexes from attaching to platelets to
trigger clotting.
Led by Dr. Bruce Furie of Beth Israel Deaconess Medical Center
and Harvard Medical School, the findings provide researchers with
insight on how to develop safer and more specific treatments to
stop clotting in lupus. In addition, the findings may be applicable to
anyone who suffers from the autoimmune clotting disorder known
as antiphospholipid syndrome (APS) – with or without lupus.
During his presentation at LRI’s second annual Scientific Forum
for Discovery, Dr. Furie described his experience treating patients
with APS, including those who also have lupus. This recent
publication on the role of platelets in APS complements ongoing
studies on a potential anti-clotting treatment called rutin. Rutin
is an FDA-approved supplement that blocks an enzyme required
for clotting. Rutin is a pill. Dr. Furie intends to use his real-time
imaging technique in live mice to evaluate how treatment with
rutin alters clot formation in the presence of APS autoantibodies.
This research, along with the identification of a platelet receptor for
the autoantibodies, may lead to new treatment options for people
suffering from APS.
Why does clotting go awry?
Platelets are blood cells that are the first responders to an injury.
When someone gets a cut, platelets arrive at the scene and help form
a clot to stop the bleeding.
A person with lupus is at risk for APS, a potentially life-threatening
complication where the body makes antibodies that interact with
blood cells to trigger blood clots when there is no injury. These clots
can cause strokes, heart attacks and other dangerous conditions.
APS also has a significant impact on the health and safety of
pregnant women because these antibodies can cause miscarriages
and pre-eclampsia (high blood pressure during pregnancy).
Previous research identified autoantibodies that attach to a protein
called beta2-glycoprotein-1 as a biomarker for predicting and
monitoring APS. Beta2-glycoprotein-1 circulates through the
bloodstream and when the autoantibodies come into contact with it
they fuse together into a complex that mistakenly triggers clotting.
Until this recent discovery the exact kind of cell the complex acts on
to promote clotting was a mystery..
Hitting the Bullseye
Accurately identifying the target of the beta2-glycoprotein-1
autoantibody complex was challenging. Researchers have thought
that the autoantibodies could be activating any of the different types
of cells integral to the clotting process.
With his 2013 LRI Novel Research Grant, Dr. Furie used cuttingedge imaging techniques in live mice to show that it is the beta2glycoprotein-1 autoantibody complex that activates platelets to
form clots. Dr. Furie’s study also showed that when platelets are
not switched on, clotting stopped even in the presence of APS
autoantibodies.
Forging Ahead
Treatment options for people with lupus and APS are limited. If
we can understand the pathway by which APS antibodies cause
harm, therapies can be developed to block these mechanisms. The
ultimate goal is an oral medication that prevents these deadly blood
clots.
Building on the new discovery described here, Dr. Furie’s next step
is to narrow down what the autoandibody complexes are attaching
And Energize LupusPA!
How do you get the most out of your energy bill?? When you
are saving money AND contributing to a worthy cause!!!!
We’ve partnered with Stream Energy, a retailer who pays our
organization a residual income for every energy customer we
enroll on Stream Energy service. They offer competitive rates
with possible savings up to twenty percent. Pennsylvania energy
customers in the Duquesne Light, West Penn Power, MedEd,
PECO, Penelec and PPL are able to make the switch. Energy
customers in the states of Georgia, Maryland, New Jersey, New
York, Texas and the Washington DC area are also eligible to
make the switch and benefit LupusPA. Pass the word along to
friends and relatives and "Help us Fight the Battle!” Enrolling is
easy – visit our webpage (www.lupuspa.org), sign up for
service, save on your bill and help us generate charitable funds.
There is no easier way to give without any additional steps or
cost on your part. It’s in your power to help.
Can we count on you???
7
LRI Joins Major New Collaboration to Understand
Lupus Genetics
May 5, 2015
The Lupus Research Institute (LRI) will collaborate on
important research to understand the genetics of lupus and
to accelerate development of new treatments.
Spearheaded by personal genetics company 23andMe in
partnership with Pfizer Inc., the study will analyze the
genetic make-up of thousands of people with lupus alongside
their health history and environmental factors. The goal
-- to uncover possible underlying genetic causes of lupus,
specifically those associated with the onset, progression,
severity and response to treatments.
“Research on human genetics has enormous potential to
deliver information that can help improve lupus treatment,"
said Margaret Dowd, President and CEO, Lupus Research
Institute. “The more insights that researchers can gain, the
faster better, safer drugs can be developed. We are pleased
to represent the lupus community on the study Advisory
Board.”
Success in Other Diseases Holds Hope for Lupus
23andMe has conducted similar genetic studies in other
diseases with considerable success. For instance, over
10,000 people from around the world participated in a
Parkinson’s disease project conducted with the Michael
J. Fox Foundation and others that provided insights into
how Parkinson’s affects men and women differently, and
uncovered new genes associated with the disease.
Call for Patient Participation
“The innovative work 23andMe has done in Parkinson’s is
very encouraging for patients with similarly challenging
diseases like lupus,” continued Ms. Dowd. “Now we call on
lupus patients as active partners in research studies like this
as well as clinical trials needed to deliver new treatments that
can change their future.”
Lupus Death Rates Vary by Race, Ethnicity, Study Finds
January 19, 2015
THURSDAY, Jan. 15, 2015 (HealthDay News) — Asian and Hispanic lupus patients in the United States have lower death rates than
whites, blacks or Native Americans with the disease, a new study reveals.
Lupus is an autoimmune disease that causes joint and organ damage. Autoimmune disorders mean the body’s immune system attacks
healthy body tissue by mistake, according to the U.S. National Library of Medicine.
“While previous research has examined racial differences among lupus patients, the studies have primarily been based at academic
research centers,” said lead author Dr. Jose Gomez-Puerta, of Brigham and Women’s Hospital in Boston. “Our study investigates the
variation in death rates due to lupus among different ethnic groups in a general clinical setting.”
Researchers reviewed Medicaid claims filed by more than 42,200 lupus patients, aged 18 to 65, between 2000 and 2006. Of those patients, nearly 8,200 had kidney inflammation caused by lupus (lupus nephritis).
By racial/ethnic group, the percentages of patients with lupus or lupus nephritis were: black, 40 percent; white, 38 percent; Hispanic,
15 percent; Asian, 5 percent; and Native American, 2 percent.
Hispanic and Asian lupus patients had the lowest death rates, according to the study published Jan. 15 in the journal Arthritis & Rheumatology. The annual death rate was highest among Native Americans, blacks and whites, in that order.
“In less than three years of follow-up of Medicaid patients with lupus, we found a great disparity in mortality [death] rates among
ethnic groups. Understanding the variation of death among the races is important to determine how best to treat individual patients,
modify risk factors, and ultimately improve survival for those with lupus,” Gomez-Puerta said in a journal news release.
Source: The U.S. National Institute of Arthritis and Musculoskeletal and Skin Diseases has more about lupus
8
LIVING LUPUS
*
BY ANDREA WITLIN, DO, PHD.
LUPUS AND THE ER: WHAT TO EXPECT WHEN YOU
ARRIVE AT YOUR DESIGNATED FACILITY
First things first. Most likely, you will arrive at your
designated facility in one of three ways: either by
ambulance, driven by a friend or family member, or
by driving yourself. Many emergency facilities have
designated “drop off” areas and/or parking
designated for patients and/or their family members
(at least while you’re checking in and registering).
Larger facilities may have valet parking available.
Many facilities will “validate” or reduce your parking
charges when you are a patient at their facility. You
may wish to bring your overnight bag with you if
you are told in advance to expect to be admitted to
the hospital,. Otherwise, you may prefer to leave
your overnight bag in the car and have your family
member or friend bring it to you later once you are
settled in and decisions are made about your care.
Remember that things can get pretty hectic during
your arrival and check-in.
First, you may have to pass through a security check
point with a metal detector (like in the airport) and
have your bags searched (especially if you are going
to a city or large university emergency room). So try
not to bring a lot of “extras” with you to make your
life easier.
their use may be restricted to specific, designated
areas. Many hospitals seem to have more than their
fair share of “dead zones” for cell service. Murphy’s
Law suggests that these areas “appear” when you
really need to reach someone! That said, it is likely
that either you or your family members may need
to make numerous calls, so try to remember to
bring along your cell phone charger.
Then, get ready for “hurry up and wait!” Emergency
Rooms do not operate as first come, first served.
The nature of each individual emergency
determines who gets seen and in what order each
individual patient or emergency is attended to.
Likewise, the specific staffing at each facility
determines who, when, where and how patients are
seen. Some of the needed support services and
specialty physicians may not be “in house” (that is
present 24/7 at the hospital) and need to be called
to come in from home. Some personnel may be “in
house” but busy with another emergency.
There's no rhyme or reason to timing or scheduling
at an ER. Each day is different. Each set of patients
is different and each circumstance determines what
happens next. Some days it seems like you are
Also remember that waiting rooms are not the
ushered back in no time flat and at other times your
place to get “chummy” with other patients (or their
wait seems to last forever. After your initial
families) especially during flu season. You don't
evaluation, there may also be some “mandatory”
want to expose yourself to other patients or visitors delays like waiting for lab results (which in the best
with infections (especially if you are
of circumstances usually take about 1 to 1 and 1/2
immunosuppressed).
hours) or x-rays. It’s also possible that the specialist
you need to see is in the Operating Room or is
A limited number of family members or friends may tending to another emergency. Smaller facilities
be allowed to accompany you back to the treatment tend to have fewer personnel available at a given
area. Each facility has its own rules. However,
time and it only takes one competing emergency to
remember that you are likely to be separated from
delay progress.
your friends or loved ones at times depending upon
the nature of your emergency.
Every facility has a variety of different personnel
(e.g., nurses, aides, lab techs, x-ray techs, attending
Cell phones may or may not be allowed and/or
physicians) each wearing different color-coded
9
outfits or “scrubs”. Teaching hospitals may have
added “student” personnel in each category (e.g.,
student nurse, student tech, student doctor).
Remember, you can always refuse their involvement,
observation, or participation in your care if you are
uncomfortable with any of the “students”.
cons of all choices before your consent to anything
that is not time sensitive or life threatening. Again,
remember this is your emergency! It is your right to
have your questions and concerns answered.
Be as clear as you can in describing what's
happening to you and what made you decide to
come to the emergency room. Remember, if your
history is inaccurate so will be your diagnosis and
treatment. But let’s be real…this is your emergency
so you may not be at the “top of your game” when it
comes to descriptions and history. Enlist and
encourage your family member(s) or friend to help
with a description of what has recently happened to
you. Better yet, have a “go to” list in your purse or
wallet of your medications, allergies, and important
history (especially if you are in a strange place and
your electronic medical record is not available). You
do want to make sure that the “lead” or attending
physician gets your story correct!
Lastly, one of three “triage” events will happen: you
will be admitted directly to the hospital, you will be
Likewise, be prepared to answer the “same”
in the ER for an extended observation period, or you
questions asked by each different group of personnel will be discharged to home. Again, if you are
caring for you. Each “class/type” of personnel is
discharged to your home, make sure you understand
required to repeat their own version of the questions. your discharge instructions and what to do if you feel
And as surprising as it may seem, many times the
worse after leaving and what would trigger a return
answers are not directly shared or communicated
call or visit.
between team members.
The next issue in this series will address emergencies
Please remember that the emergency room is not a
specific to lupus.
substitute for your PCP or rheumatologist visit.
Ongoing management of your chronic issues will not Call 9-1-1 for sudden or unexpected medical
be addressed. These issues will only be addressed to
conditions that could cause significant harm or death
the point that they may impact the treatment of your without prompt attention. (see table below for
acute or new problem or emergency
examples).
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Call 9-1-1 for problems such as:
Chest pain
Choking
Severe head injury
Stopped breathing
Severe shortness of breath
Loss of consciousness
Seizures
Major burns
Severe bleeding
Vomiting and/or coughing up blood
Persistent vomiting
Change in vision
Suicidal feelings
Don’t be afraid to ask questions. Speak up if you
think you’ve been forgotten. Make sure you
understand what tests and/or medications are being
ordered for you (and why), and what to expect for
your care. Be sure to ask about the potential side
effects of all tests or treatments and the pros and
Lupus is a column providing helpful information to those affected by the day-to-day challenges of this complex and puzzling disease. It is written for
* Living
those with lupus by, those with lupus. If you have something you would like to share, please contact the Lupus foundation office at 800-800-5776.
This current series on various aspects of emergency care and use of the ER is authored by Andrea G. Witlin, DO, PhD. She has been a practicing physician
for 25 years and is a fellow lupus patient.
10
LUPUS NEWS AROUND PA
Our First Ever Murder Mystery Dinner Fundraiser
Mobsters, Molls &
Marinara, held on
March 8th at the
Spaghetti Warehouse
in Pittsburgh, was a
sellout success. Thanks to the talent and antics of the Mystery’s
Most Wanted players, comedy and laughter prevailed. Guests
enjoyed a great dinner and dessert while working to solve the
mystery. Prizes were awarded to the top detectives! We thank the
Spaghetti Warehouse, Mystery’s Most Wanted, our amateur sleuths
and event donors. Stay tuned, plans are in the making for 2016! If
you missed this one, we hope to see you there!
37th Annual Lupus Luncheon and Fashion Show
Once again, Donna
Polito, Dolly
Pferdehirt and the
Pferdehirt family did
an amazing job on
this year’s luncheon
held on April 11th at
ELEVEN
Contemporary
Kitchen in
Pittsburgh. Thank
you to all sponsors, donors and attendees! We expressly thank
longtime emcee Larry Richert, KDKA News Radio 1020 and the
Big Burrito Group. Jackee Ging and Style Truck featured the latest
fashion trends as Yu-Ling Behr showed luxury handbags and
jewelry by Sandra Cadavid. In addition to a fabulous lunch and
show, attendees enjoyed and participated in our annual Spring
Auctions. We thank also, our volunteers, beautiful models and the
professional staff of ELEVEN who contribute greatly to the success
of this event.
Taming the Wolf
The 2015 Taming the Wolf auction event occurred on May 16th at
Candlewood Suites in Hazleton, PA. The festival featured raffle
baskets, entertainment, and a bake sale as well as health
screenings and information tables. We sincerely thank Luzerne
County Representative, Cynthia Donlan, for her determination in
her fight against Lupus. Cynthia’s hard work and dedication is the
reason for this event’s success. We also thank the many event
volunteers and contributors for their ongoing support of Cynthia,
the foundation and Lupus patients across PA. Cynthia can be
reached at 570-956-0072 for additional details.
3rd Annual Empowerment of the Alpha Wolf Conference
& Banquet. Our thanks to Cynthia Donlan for, once again,
organizing this event. Mark your calendar! The conference
and banquet are scheduled for July 22nd & 23rd at the Sands
Spring Country Club in Drums, PA. Additional details will be
available soon.
6th Annual Ronin Awareness Ride and Cookout
This benefit motorcycle ride and cookout is a family/community
fundraising and awareness event held in loving memory of Barbara
Bellamy. This year’s event will be held on June 13th at Universal
Park in Penn Hills, PA. The ride will begin at the Holiday Inn in
Monroeville, PA and will end with a picnic at Universal Park where
families and friends will gather for food, fun and playful activities.
Our thanks to Jarrett Logan and the Ronin members for their
continued generosity and work for the Lupus cause. For more
information, contact 412-716-6870
2015 Smoked Country Jam Bluegrass Festival
This 3-day annual family-friendly event held at Quiet Oaks
Campground in Cross Fork, PA will run from June 18th through the
20th. This festival showcases past and present American-made
music bringing together performers from all branches of the
bluegrass tree. The event will feature a 3-day Lupus Auction,
spreading awareness and supporting patients across PA. Thank you,
Ron and Teresa Kodish, for your ongoing hard work and dedication
in organizing this annual event. Visit www.smokedcountryjam.com
for ticket and event information.
26th Annual Lupus Challenge Golf Tournament
The 26th Annual Lupus Golf Challenge will be held on
July 13th at The Club at Nevillewood. Join co-chairs
Tom Miller and Jay Caufield along with the families of
Lisa King McKean, Kathleen Rooney Miller and Daniel
& Emily Pietragallo as they continue to generously
support the foundation year after year. If you are
unable to join us for the whole day, plan to come for
cocktails and dinner. We also thank the Pittsburgh
Steelers and Regency Transportation for ongoing
sponsorship of this tournament. Call 800-800-5776 or
visit www.lupuspa.org for registration and information.
Jess Hager Holiday Greeting Cards
Jess Hager’s generosity and passion for those suffering with Lupus
continues to live on long after his passing. As per his wishes, Mrs.
(Jan) Hager has worked with us each and every year since to
incorporate one of Jess’ original paintings into our beautiful
greeting card collection. We sincerely appreciate all that Jan has
done and donated to keep the distinctive artwork of Jess Hager
available to the foundation. Scenes for the 2015 Holiday Season
will be available in the fall.
11
3rd Annual Mary Ann Vento Memorial Concert
The third “rockin” year of this
event will take place at the Baja
Bar & Grill in the Fox Chapel
Yacht Club on Sunday, August
16th. Enjoy live music by The
BUSINESSMEN and The Nied’s
Hotel Band in the surrounds of a
very pleasant atmosphere.
Raffles and auctions will be part
of the day’s events. Our thanks to John Vento, the band members
and dedicated volunteers for their generosity and support of the
Lupus Foundation of PA.
Lopin’ for Lupus - New Location Announcement!
Unfortunately, weather related farm conditions made it necessary to
cancel the Lopin’ for Lupus Horse Shows scheduled this spring at
Simmons Equestrian Center. We sincerely thank the Simmons family
and everyone at Simmons Equestrian Center for hosting this event
from its conception and regret that the event is unable to continue
there. Their generosity was instrumental in the start of this event, its
growth and its success.
However, we are happy to announce that Lopin’ for Lupus has
found a new home. The fall show is scheduled for October 3rd at
Pure Gold Equestrian Center in Salem, Ohio. We thank Pure Gold
for welcoming the foundation and look forward to working with
them in the continuing success of this event. We especially thank
Mary Jane (Janie) Ruffner for her hard work and dedication in
implementing and organizing the Lopin’ for Lupus Horse Shows.
For additional information, Janie can be reached at 330-542-9459.
Thinking (and Fundraising) Outside The Box
We acknowledge and thank those involved in the following for the
thoughtfulness, hard work and support they have shown through a
variety of fundraising and awareness opportunities.
Positively Pittsburgh – Popular Pittsburgh Charity Awareness Program
Property Management Inc. – “Dress Down Day”
Goodwill Auto Auction – Auto Donation Program
Thiel College – Thiel Luncheon
Pittsburgh Allegheny 6-8 – Allegheny Middle School “Day of Giving”
Additional ideas can be found on www.lupuspa.org. Please let us
know if you have an idea or know of a particular available venue.
We will be happy to assist and provide information.
Lisa Ross, Lehigh County representative, was recently
interviewed by Rev William Kuntze on the
television show "Taking the Initiative". A
community based show featuring
individuals active in their
communities. The discussion included
"What is lupus, who gets lupus , the
warning signs and symptoms of lupus, the
mission of the Lupus Foundation of
Pa and the comprehensive patient
services provided. Lisa discussed efforts to raise awareness and
provide patient support through the Lehigh Valley Lupus
LUPUS FOUNDATION OF PA
CELEBRATES ITS 40TH ANNIVERSARY
In 1975, after being
diagnosed with a
frightening disease, to
which there were no
answers, Barbara L.
Vandergrift began a quest.
Her strong determination
through grass root efforts
began the journey to
discover a cure.
Barbara’s personal goal ended in 2005, but because of her
efforts and the tremendous amount of support received
since, the Foundation is in its 40th year of promoting
awareness, education, support and research for those
affected by lupus.
With your help, our patient services program can remain
the core of the Foundation allowing us to continue on the
track of meeting critical needs across Pennsylvania. Your
donation can keep us running as we strive to reach
Barbara’s finish line – the lupus cure.
We don't want it to take another 40 years to find the cure,
so donate today. Visit www.lupuspa.org to make an online
donation or send your check (made payable to Lupus
Foundation) to Lupus Foundation of PA/Barbara’s Goal,
Landmarks Building, Ste 1920, 100 W Station Square
Drive, Pittsburgh PA 15219
Master of Ceremonies – Steve Hansen from WDVE’s Jimmy & Steve
fame! Portion of the proceeds benefit the Lupus Foundation of PA
For tickets and information visit www.pittsburghoptimist.com or call
878-302-2234
12
SUN PROTECTION AND CONNECTIVE TISSUE DISEASE
Featured in the July 2014 Scleroderma, Vasculitis & Myositis eNewsletter
Horatio F. Wildman, MD
Department of Dermatology, Weill Cornell Medical College
Remember that, even on cloudy days, we still are exposed to about 80% of
the ultraviolet light present on a sunny day. Recreational activities near water
require additional caution as water reflects up to 80% of the sun’s rays.
Wear protective clothing, such as a wide-brimmed hat and long sleeve shirts.
Tightly woven or dark fabric offers the best protection. Some companies
specialize in high-UPF (Ultraviolet Protection Factor) clothing, hats, and
umbrellas.
After a long winter, summer is finally here. As we spend more time outdoors, it is important to protect against the strong summer rays. Sunlight
contains harmful ultraviolet rays that increase the risk of skin cancer, accelerate aging of the skin, and flare connective tissue disease.
Physical Protectors: Window glass blocks UVB light however, UVA can still
penetrate. Since UVA can worsen lupus and dermatomyositis, light penetrating through windows can flare disease. Protective window films applied to
car windows or windowpanes can offer additional protection.
Sunlight that reaches the Earth’s surface contains two types of ultraviolet
(UV) light, both A and B.
Use broad-spectrum sunscreen with an SPF of 30 or higher.
Isabela Wieczorek, MD
Department of Dermatology, Weill Cornell Medical College
UVB light is more damaging, causing sunburns and altering DNA in the
body’s cells.
Sunlight contains about 10-20 times more UVA light, which penetrates the
skin more deeply.
Both forms of UV radiation cause skin cancer and premature aging of the
skin. Tanning beds also produce UVA and UVB radiation, often at much
higher levels than the sun.
Sun protection is especially important for people with connective tissue
disease. Even for individuals with darker skin tones, sunlight can trigger
disease.
Lupus Erythematosus: Sunlight, both UVA and UVB, leads to a variety of
symptoms ranging from skin rashes to internal organ damage, even weeks to
months after exposure to the sun. UV light can trigger the butterfly rash of
lupus and cause scarring in chronic lupus lesions of the skin.
Dermatomyositis: Rashes in dermatomyositis arise in sun-exposed areas,
such as the scalp, face, V-neck chest, and shoulders. These rashes can burn,
sting, or itch.
Scleroderma: Although certain types of UV light are used as a treatment to
lessen skin thickening, some scleroderma patients are photosensitive and
develop rashes or sunburns quickly. UV light can also worsen the hyperpigmentation (darkening) of scleroderma skin.
It is important to recognize that many medications cause the skin to be more
sensitive to light, also known as photosensitizing. This manifests as sunburn
or rashes developing after brief exposure to UVA radiation.
COMMON PHOTOSENSITIZING DRUGS INCLUDE:
•Antibiotics (eg. Bactrim, Cipro, Levaquin, Doxycycline and other
tetracyclines)
• Antimalarials (eg. Plaquenil)
•Blood Pressure Medications (eg. Diltiazem/Nifedipine,
Hydrochlorothiazine)
• Immunosuppressant drugs (eg. Imuran, Methotrexate)
Some immunosuppressant medications, such as azathioprine and cyclosporine, used to treat connective tissue disease may also increase the risk of skin
cancer. These medications impair the immune system to repair or destroy
UV-damaged cells, allowing mutated DNA to develop into skin cancer.
HOW CAN I PROTECT MYSELF FROM THE SUN?
Avoid the sun between 10 a.m. and 2 p.m. At these times, a greater amount
of UVB reaches the Earth. Eating lunch indoors can be a smart idea.
WHAT TYPES OF SUNSCREEN ARE AVAILABLE?
Sunscreens are made of a mix of ingredients that reflect or absorb light,
preventing damaging UV rays from penetrating the skin.
Overall, sunscreens are divided into physical or chemical blockers.
•Physical blockers reflect ultraviolet light away from the skin. Examples
are zinc oxide and titanium dioxide.
•Chemical blockers absorb and turn ultraviolet light into energy that
cannot damage the skin. There are many types, including oxybenzone,
avobenzone, MexorylTM SX.
It is important to pick a sunscreen that offers protection from both UVB and
UVA rays. These sunscreens are called “broad spectrum”.
WHAT IS SPF?
SPF stands for sunburn protection factor and is a scientific way to measure
how much a specific sunscreen protects the skin from sunburn due to UVB
compared to skin that is unprotected. SPF does not measure how much a
sunscreen protects from UVA light.
HOW SHOULD I APPLY THE SUNSCREEN?
When to apply: 15-30 minutes before sun exposure to allow the sunscreen to
bind to your skin.
How much to apply: The average adult will need one ounce (about a palm
full or one shot glass) of sunscreen to cover all skin exposed to sun.
How often to re-apply: Every two hours, or immediately after swimming
or sweating too much. Some sunscreens offer “water resistance” for 40 or
80 minutes. This means the skin can be wet or sweaty for 40 or 80 minutes
prior to needing to apply again.
Don’t forget your lips and eyes and select lip balms that are broad spectrum
and contain at least SPF 30.
Select sunglasses that offer 99% protection from UVA and UVB and remember, the wider the sunglasses, the more area they protect.
TANNING
It is a dangerous myth that UV rays only damage skin after a sunburn. Even
the development of tanned skin is evidence that UV light is changing cellular
activity in the skin and causing DNA damage. Tanning beds not only cause
a very high increase in skin cancer and melanoma, but also can cause lifethreatening disease in patients with connective tissue disease.
Cosmetic bronzers and sunless tanners can safely give the appearance of a
tan. This “tan” does not provide any protection from UV-light, so sun protective measures should still be used.
Posted: 7/9/2014
13
SLE Patients Say Disease Hinders Ability to Work
Employability may be enhanced by better lupus treatment.
by Wayne Kuznar
Contributing Writer
also reported more pain, fatigue and depressive symptoms, and worse
cognition than controls.
Action Points
Patients with SLE were half as likely than controls to be working full time
(24% versus 50%, P<0.05), and 49% were employed full time in the year
of their SLE diagnosis.
Almost one-third of patients with systemic lupus erythematosus report
work disabilities, along with higher absenteeism and decreased work
productivity.
Note that work disability status was associated with older age, AfricanAmerican race, and having less than a 4-year college education on
univariate analysis.
Almost one-third of patients with systemic lupus erythematosus (SLE)
report work disabilities, along with higher absenteeism and decreased work
productivity, according to surveys conducted at six medical centers.
Among more than 300 patients with SLE, 31% described their work
status as work disability, defined as "not working and not seeking work,"
compared with 4% of controls (P<0.05). Nonworking patients with SLE
were significantly more likely to ascribe their working status to health
problems than nonworking controls (88% versus 15%, P<0.05), reported
Tammy O. Utset, MD, MPH, from the University of Chicago, and colleagues in Lupus Science and Medicine.
On the basis of answers generated from the patient questionnaires, the
average deficit in work hours in patients with SLE was 2.7 hours per week
while controls worked an excess of 4.7 hours, when measured as a weekto-week variable (P=0.17). "While this did not reach statistical significance due to the high variability of responses, this number is likely to be
sensitive to change over time," the investigators wrote.
SLE patients are living longer, and one of the socioeconomic facets of SLE
that should be assessed is the ability of patients to maintain paid employment, the authors pointed out.
"In employed and nonemployed patients with SLE, disease-related issues
may impair functionality in child-rearing and household tasks as well as
work function," they stated. "Employability may be enhanced by improving treatment of depressive symptoms in patients with SLE."
The study included 344 patients with SLE and 322 controls. The matched
controls without SLE were recruited by the patients themselves to approximate a control group that had similar demographics and socioeconomic
status to the cases. Patients completed a survey on work and domestic
function, and their rheumatologists completed questionnaires on the
cases' medical history. Controls also completed a work status survey.
Median duration of disease in the study arm was 9 years, and median
score on the Systemic Lupus International Collaborative Clinics/American College of Rheumatology Damage Index (SLICC/DI) was 1. Patients
with SLE had an average of 4.2 comorbidities compared with 1.5 in the
controls (P<0.01). Controls were more often Caucasian.
The authors noted that health-related quality of life subscales were
impaired in the patients compared with controls by the second version
of the Medical Outcomes Survey Short Form (P<0.01). Patients with SLE
Compared with controls, patients with SLE:
Were more likely to report receiving a Social Security disability pension:
41% versus 4% (P<0.05)
Reported working fewer hours in the week prior to their survey: 33.3
versus 39.1 hours (P<0.05)
Reported more sick days in the month prior to the survey: 2.3 versus 0.4
days (P<0.05)
Had worse self-assessed productivity over the previous 4 weeks: 77%
versus 85% (P<0.05)
On univariate analysis, the mean pain scale, fatigue scores, Brief Cognitive Symptoms Index (BCSI) score, and depressive symptoms were worse
in patients with SLE with work disability (P<0.01 for all).
Work disability status was associated with older age, African-American
race, and having less than a 4-year college education on univariate analysis (P<0.01 for all).
"Both highly physical and highly cognitive jobs represented challenges to
employed patients with SLE," the authors found. While patients with SLE
with physically demanding jobs reported worse presenteeism compared
with controls with similar jobs (77% versus 84.6%, P<0.05), patients with
SLE with the most cognitively demanding jobs reported greater absenteeism than controls (P<0.05) and worse presenteeism (P<0.001).
Potential limitations of this study include its cross-sectional nature, which
precludes longitudinal analysis, "and the lack of validation of internal
consistency by repetition in individual patients."
The authors pointed out that "self-administered questionnaires exploring
patient functionality in a variety of domains provide greater insight into
the lives of patients with SLE, document severity of disease, and may help
to measure progression or improvement in disease."
The study was supported by Genentech. The company also financed Harris Interactive, the research firm that managed the logistics of the study.
Two co-authors are employees of Genentech and Harris Interactive.
Utset and co-authors disclosed no relevant relationships with industry.
Reviewed by Robert Jasmer, MD Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA,
BSN, RN, Nurse Planner
last updated 02.03.2015
14
LIFE WITH LUPUS
By Jan Grice
Keith Diamond: Lupus, Male, and Not-So-Rare
Keith Diamond
had been married
to his wife
Kimberly for a few
years when she
started a new job
as Lupus Research
Coordinator at the
University of
Pittsburgh Medical
Center’s Lupus
Center of
Excellence.
Kimberly is the
lupus research
coordinator with a Bachelor of Science in Natural Sciences and
a Bachelor of Arts in Health Services Management with a
certificate in Project Management and has worked at UPMC/
Pitt for twenty years. The couple met there, where Keith, a
Licensed Practical Nurse, works in the Imaging Services
Department as Lead Clinical Technician. The couple shares a
love for the medical sciences. Kimberly’s new position meant
that she had some studying to do, brushing up on lupus. She
recalls, “I was learning a lot of things about the disease, and so
many things seemed to match the health problems Keith had
begun to develop.” Within a few months, Kimberly’s suspicions
were confirmed – Keith became one of the rare men to be
diagnosed with lupus.
Over the last few decades, research and educational efforts have
increased awareness of lupus among the general population.
Most people have heard of the disease and many know of
someone who has it, most often a woman. The majority of
people with lupus are female – as high as 90% of all cases.
Lupus does, however, affect men. Because of its relative rarity
in men, it is often overlooked as a diagnosis. When Keith called
his doctor about pain in his feet, the first thing that was tested
was his uric acid level – an indicator for gout, a disease
common in men. The level was elevated and Keith was
diagnosed with gout. Keith says he was not surprised. “There
is a strong history of autoimmune diseases in my family,” he
explains. “My younger sister died at age 30 after 2 liver
transplants from autoimmune hepatitis, and both my parents
have psoriasis. And, my older sister had psoriasis, my young
sister has rheumatoid arthritis and my aunt has lupus.” Keith,
too, had previous health problems before his gout diagnosis. He
suffers from Berger’s Disease (also known as IgA Neuropathy),
which affects the kidneys and is autoimmune related.
Keith continued to work at his job, managing the best he could
with the pain in his legs and feet. His rheumatologist treated
his gout with Allopurinol, which brought down the uric acid
level, but Keith still had pain. “I was so tired and achy,” he
recalls, “that my primary care doctor thought I was depressed.”
A round of anti-depressants had no effect. At about the same
time, Keith noticed a rash across his nose and cheeks. “It was
kind of rough, and sort of hurt,” he says. “I said to Kimberly –
I’m breaking out again like a teenager!” Kimberly was learning
about the signs of lupus at her new job and everything started
to seem just a little bit too familiar.
Kimberly works with Dr. Ghaith Noaiseh at the Lupus Center of
Excellence and told him about some of the issues her husband
was facing. “I asked him what tests he thought Keith’s PCP
should run,” she recalls. Keith was more than glad to
investigate. He says, “There’s one thing I’ve learned about my
wife: when she says something is true, it almost always comes to
fruition!” Keith’s doctor ran the tests recommended by Dr.
Noaiseh and sure enough, Kimberly was correct. Keith has
lupus.
Under Dr. Noaiseh’s care, Keith was started on a high dose of
steroids and Plaquenil. He continued his gout medication, as
the lupus diagnosis did not void the gout diagnosis. Keith’s
symptoms of rash, photosensitivity, and joint pain improved
and he was able to lower his steroid dose. He says, “I don’t like
to take too many medications, but I could not handle stopping
the steroid altogether.” He is still bothered by fatigue, especially
after a full day of work. “I love my job and I don’t like to miss
work. But the high pace of my day is not ideal,” he admits.
Keith credits his wife’s strong support in helping him to cope
with his multiple medical issues. He says, “I don’t know where
I’d be without my wife. She goes to appointments with me and
makes sure I tell the doctors the truth about my symptoms. I’m
not so good at being honest with them,” he jests. His praise for
the Lupus Center of Excellence goes beyond the fact that his
wife works there. He says, “My rheumatologist and my
nephrologist work together as a team, along with my PCP. My
nephrologist even called in from his vacation to consult when I
needed a kidney biopsy.” Keith was later diagnosed with a
second kidney condition – Focal Segmental Glomerulosclerosis
(FSGS) – a complication of kidney disease.
Keith has two adult children from a previous marriage. He says
they both worry about him. “My older daughter saw my sister
at her worst when she was dying from the autoimmune
hepatitis,” he explains, “and that makes her not want to talk
15
much about my illness.” Keith credits Kimberly with being open
with his daughters. He says, “She just told them – ‘Your dad is
sick, but he’s not dying.’ – and that helped us all.” When asked
what his biggest fear is, Keith says that he worries about getting
worse and not being able to do the things he enjoys. “We love
to fish. We have a nice inflatable boat. But we hardly got out at
all, the last couple years. I just have to come to grips with that,”
he concedes. He and Kimberly have learned to plan “relaxation”
vacations, travelling in the off-season to avoid the sun and
crowds, and choosing quieter locations, like the Outer Banks
beaches. They do plan a five-year anniversary trip to Disney
World. After a previous trip, Keith says they are going to do it
right this time – “no helter-skelter, run-around craziness!”
Keith has not sought out help from support groups. He says,
“Kimberly is my support group!” With strong family care,
encouragement, and help, many patients do not feel the need to
connect with others with lupus. Both Kimberly and Keith,
however, participated in the Pennsylvania Lupus’ annual Lupus
Loop 5K Run/Walk in Pittsburgh last autumn. For Keith, it was
the first time he met others with lupus in an organized activity.
Seeing so many women did not make him feel out of place. He
says, “I don’t feel like I have a woman’s disease. Sometimes I feel
like an old woman, though!”
Although Keith is not the typical female lupus patient, his
experience of the disease is not rare. He has to learn the same
ways of coping that all those with lupus must tackle. He
struggles with getting the right medication balance, managing
work, explaining his limitations to family members, and
accepting a new self image. His advice to others is “to be
patient. It can knock you to your knees in the blink of an eye.”
Like others with lupus, he struggles with the invisibility of the
disease and the misconceptions of others about the severity of
the fatigue. “I look normal,” he says. “Most people don’t see it
when I’m tired.” He works on being as calm and stress-free as
possible. As one who sees people with illnesses all day long, he
has a good empathy and can understand physical limitations.
With Kimberly’s expert and loving support, he looks forward to
the future. His attitude is summed up in his optimistic
conclusion: “Things are coming around. Lupus is there but we
are working on controlling it.”
DID YOU NOTICE SOMETHING IMPORTANT
MISSING IN THE LAST NEWSLETTER?
We did-AFTER IT WAS PUBLISHED!
At the Intersection of Hope and Reality on page 14 did not have
an author. Unfortunately by Andrea Witlin, DO, PhD was
missing. Our sincere apology for this omission.
Hydroxychloroquine reduces
risk of incident diabetes
mellitus in lupus patients
in a dose-dependent
manner: a population-based
cohort study
Abstract
Objective. SLE is associated with increased risk of diabetes
mellitus. Treatment for SLE requires high-dose glucocorticoids
that may worsen glucose homoeostasis. HCQ can reduce diabetes risk in RA. This study aimed to investigate the association of
HCQ use and diabetes mellitus risk in SLE patients.
Methods. This nationwide, population-based cohort study was
conducted using the Taiwan National Health Insurance Research Database. In the period 2001–10, 8628 newly diagnosed
SLE patients were identified after excluding those with a previous diagnosis of RA, psoriasis or diabetes mellitus. Incidence of
diabetes mellitus was identified as a new diagnostic code using
a diabetes mellitus-specific medication.
Results. Two hundred and twenty-one newly diagnosed diabetes mellitus patients were identified among SLE patients (6795
had taken HCQ and 1833 had never taken HCQ), with an
average follow-up period of 5.6 years. Compared with patients
without HCQ treatment, the hazard ratio (HR) of diabetes
mellitus in patients taking HCQ at a cumulative dose ≥129 g
was reduced [HR 0.26 (95% CI 0.18, 0.37), P < 0.001]. Daily
glucocorticoid ≥10 mg prednisolone-equivalent dose was associated with increased risk of developing diabetes mellitus [HR
2.47 (95% CI 1.44, 4.23), P = 0.001], which was minimized by
concomitant HCQ use at a cumulative dose ≥129 g.
Conclusion. In SLE patients, the use of HCQ is associated with
reduced risk of incident diabetes mellitus in a dose-dependent
manner. High-dose glucocorticoids increase the risk of diabetes, which can be decreased by concomitant HCQ use.
1. 1 Division of Allergy, Immunology and Rheumatology, Department of Internal Medicine, Taichung Veterans General Hospital,
Taichung, 2Faculty of Medicine, School of Medicine, 3Institute of
Clinical Medicine, National Yang-Ming University, Taipei, 4Department of Medical Research, 5Department of Psychiatry, 6Division of
Endocrinology and Metabolism, Department of Internal Medicine,
Taichung Veterans General Hospital, 7Division of Immunology and
Rheumatology, 8College of Medicine, 9Institute of Biomedical Science, National Chung-Hsing University and 10School of Medicine,
Chung-Shan Medical University, Taichung, Taiwan.
1. Correspondence to: Der-Yuan Chen, Division of Allergy, Immunology and Rheumatology, Department of Internal Medicine, Taichung
Veterans General Hospital, No. 1650, Sec. 4, Taiwan Boulevard,
Taichung, Taiwan 40705. E-mail: [email protected]
• Submitted 15 April 2014
• revised version accepted 29 September 2014
16
Things to Avoid
If you have lupus or a condition that predisposes you to lupus, such as
undifferentiated connective tissue disease (UCTD), there are certain
foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided
by people with lupus or autoimmune diseases suggesting “pre-lupus.”
(1) Sunlight
People with lupus should avoid the sun, since sunlight can cause rashes
and flares. Some people are more sensitive to sunlight than others, but
all people with lupus are advised to be cautious when they are outside.
Of course, it would be impractical to completely avoid going outdoors,
but try to be prepared. Carry a sunscreen with an SPF of at least 70
and be sure that your sunscreen contains Helioplex, an ingredient that
blocks UV-A and UV-B rays, both of which are harmful to people with
lupus. Apply sunscreen to all areas of the body, even those covered by
your clothes, since most normal clothing items only protect your skin
to the level of SPF 5. In addition, carry a hat with you when you know
you will be outside. Certain sportswear manufacturers now make hats
with SPF built into the material, which may be helpful for people with
greater photosensitivity.
(2) B
actrim and Septra
(sulfamethoxazole and trimethoprim)
Bactrim and Septra are antibiotics that contain sulfamethoxazole and
trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They
are also sometimes given prophylactically (i.e., to prevent infection),
especially in people taking immunosuppressive medications. However,
it is very important that you avoid Bactrim and Septra, because these
antibiotics are known to cause an increase in sun sensitivity and lower
blood counts in people with lupus, resulting in lupus flares. Several
medications can be used instead of Bactim or Septra for the prevention
and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis
pneumonia.
(3) Garlic
Scientists believe that three substancs in garlic—allicin, ajoene, and
thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes.
Scientists also believe that the sulfur components of garlic help to
prevent and suppress cancer in the body. For this reason, garlic is often
used as a supplement to combat colds and infections. Unfortunately,
the enhancement of immune response is counterproductive in people
with autoimmune disease such as lupus, because their immune system
is already overactive. As a result, people with lupus and lupus-like signs
should avoid cooking with garlic and adding it to food. Of course, a
tiny amount of the herb will not harm you, but try to consciously avoid
purchasing and preparing foods with garlic.
(4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid called L-canavanine that can
increase inflammation in people with lupus by stimulating the immune
system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.
(5) Melatonin and Rozerem (ramelteon)
Melatonin is a hormone secreted by the pineal gland in your brain that
regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed
during the light hours of the day and stimulated by dark, helping you
stick to patterns of nighttime sleep and daytime wakefulness. As a
result, melatonin is often used as a sleep aid over other medications.
Melatonin and melatonin-containing supplements should be avoided in
people with lupus and other autoimmune disorders because they may
stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon),
because it mimics melatonin in the body. It is important that you
understand the necessity of avoiding both melatonin and Rozerem,
since sleep aids are often used to help people with fibromylagia and
other conditions to attain normal sleep patterns. In general, be sure that
you speak with your physician before taking any new medications or
supplements.
(6) Echinacea
Echinacea is often used as a dietary supplement to boost the immune
system against colds and other illnesses. However, because Echinacea
boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in
Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune
diseases should avoid these supplements. In general, it is important that
you speak with your physician before taking any new medications or
supplements.
17
TAKE TIME TO RELAX AND TRY SOME ART THERAPY: COLOR IN THE BUTTERFLIES
Art therapy and color therapy specifically are creative ways to relieve stress,
and can have various therapeutic and beneficial effects. Artists can achieve
focus and inner peace through the repetitive and visually stimulating activity, while allowing for a degree of control over the work and an outlet for any
over stimulating frustrations or negative emotions. Color, and art, can act as
a channel for unwanted or overwhelming feelings, stressors, etc, and bridge
the gap between the conscious and the unconscious mind, allowing for a
flow of energy from person to piece. Allow yourself the freedom that this
expressive outlet can give you.
Butterflies represent Lupus in a significant way- about a third of those affected develop an often irritating, butterfly shaped rash across the bridge of
the nose, which unfurls across the cheeks, hence the subject matter.
Tip: Certain colors can invoke certain moods/feelings:
Red- fire, passion, importance, danger, raised blood pressure, enhanced metabolism
Pink- the ‘pink effect’: coziness, warmth, pleasantness
Purple- royalty, drama, luxury
Blue- serenity, calm, responsibility
Green- tranquility, inner peace, self-esteem, new beginnings
Yellow- welcoming, exuberance, joyfulness
Brown- safety, warmth, nostalgia
Black- elegance, depth, power, sophistication
White- purity, cleanliness, virtue, simplicity
Created by Brianna Gesswein, student volunteer at the Lupus Foundation of PA
18
COUNTY REPRESENTATIVES
ADAMS
Kristin Hundley
717-337-9226
ALLEGHENY
Branch Office
412-261-5886
BEAVER
Sheila Drevna
724-891-2884
BEDFORD
Sally Frear
814-623-5820
BERKS
Melissa Rogers
610-376-5402
BLAIR
Marjorie Snyder
814-944-5911
BUTLER Rose Hinch
724-283-8811
CAMBRIACathy Ringler, RN 814-242-9787
CENTRE
Melissa Ostroff-Gundrum
814-235-1376
CLARION
Kathy Baker, RN
814-221-8407
CLEARFIELD
Susan Bender
814-342-1889
CLINTON
Teresa Kodish 570-753-8878
CRAWFORD
Linda Bauer
814-382-0230
DAUPHIN
Carol Lupkie
717-564-1170
ELK
Lynn Hoffman
814-781-6493
FAYETTE
Roxanne Ridgely
724-529-2402
FOREST
Donna Confer
814-755-4410
FRANKLIN
Kathleen Rollins
717-264-7099
GREENE
Linda Husenits
724-833-4761
HUNTINGDON
Ruth Hockenberry
814-448-3152
LANCASTER
Tammy Hoover
717-721-1625
LAWRENCE
Elvira Francazio
724-658-7826
LEBANON
Greg Keiper
717-273-2094
Jackie Brubaker
717-450-3336
LEHIGH
Lisa Ross
610-398-2156
LUZERNE
Cynthia Donlan
570-956-0072
LYCOMING
Beth Good
570-398-1355
MERCER
Lee Gall
724-253-2182
MCKEAN
Mary Dynda
814-362-4546
MIFFLIN
Brenda Fike
717-899-7737
MONROE
Barb Bourgeous
516-582-9719
NORTHUMBERLAND
Nancy Stuckey
570-473-1210
PIKE
Barb Bourgeous
516-582-9719
POTTER
Brenda Bonczar
814-274-8529
SCHUYLKILL Jackie Ritzko
570-691-6935
SOMERSET
Dolores Wasylczak, RN
814-445-8684
VENANGO
Cathy Graf
814-797-2725
WARREN
Dave & Helen Slocum
814-726-8643
WASHINGTON
Vickie Law 724-258-6198
WAYNE
Barb Bourgeous
516-582-9719
WESTMORELAND
Carla Bates
724-797-7936
Christine Hoke
412-558-1247
WYOMING
Carrie James
570-836-2810
YORK
Denette Reed
717-252-3610
Deb Downs
717-699-0475
Counties without a current representative. Please Contact Pittsburgh Branch Office at 1-800-800-5776
19
STATEWIDE ONGOING MONTHLY SUPPORT GROUP PROGRAMS
HARRISBURG BRANCH
PITTSBURGH BRANCH
POCONO/NE BRANCH
CHAMBERSBURG
Summit Health Center
Call for dates and times
Contact Kathleen Rollins
717-264-7099
BUTLER
Hill United Presbyterian Church
Third Tuesday each month 7 pm
Contact Rose Hinch
724-283-8811
HAZLETON
Bowl Arena
Second Tuesday each month 7 pm
Contact Cynthia Donlan
570-956-0072
LANCASTER
Lancaster General Health Campus
Third Sunday of the month 4:30-6PM
Contact Tom Spaeder 717-394-8989
CLARION
4th Friday each month 11-12:30pm.
Clarion Forest VNA, Clarion, PA.
Contact Kathy Baker, RN
814-221-8407
LEHIGH VALLEY
Allentown
Fourth Saturday each month 11AM-1PM
Good Shepherd Health & Tech Center
Contact Lisa Ross
610-533-9586
UPMC PASSAVANT
Third Tuesday each month 7 pm
Contact Chris Callen
724-759-1021
The Lupus Foundation of Pennsylvania gratefully acknowledges the volunteer efforts of the many that
have led support groups over the years. Through their generous contribution of time and talent, many
individuals and their families and friends gained knowledge and support in dealing with this chronic
disease. From time to time, these leaders are not available and the group does not meet. We are always
interested in speaking with someone who may be interested in organizing a new group in their area.
This person is not expected to have all the answers; rather a willingness to share and organize. The
Patient Services Director would work hand in hand with the individual to be prepared to take on this
rewarding activity. Anyone wanting more information is welcome to contact Marian Belotti, RN at the
foundation to learn more.
TELEPHONE SUPPORT GROUP
SECOND Wednesday each month -7:00 pm-8:00 pm
Get the latest information, as well as support, without leaving your home.
All you need is a telephone. To receive your call-in instructions, contact the
Pittsburgh Branch at 412-261-5886 or toll free 1-800-800-5776
Like The Lupus Foundation of PA to receive regular, updated information
about lupus and happenings around the foundation.
Like Congressional Lupus Caucus which was established as a forum for
members of congress to support lupus research, awareness and
understanding of the disease
Like Lupus Research Institute which promotes and supports research on
SLE prevention and treatment.
YES – THIS MARKS THE 20TH YEAR THAT WALKERS, RUNNERS AND
SKATERS (AND OUR CANINE FRIENDS) – YOUNG AND OLDWILL JOIN TOGETHER AT THE LUPUS LOOP!!!
Sponsored by Hefren Tillotson, the 20th anniversary celebration event will take place on
Saturday, September 19th in Station Square, Pittsburgh.
Join Honorary Chairman Kelvin Beachum of the Pittsburgh Steelers and his family, as they team up to tackle lupus.
Plentiful food, refreshments and snacks are included in the $25 registration fee.
A 20th Anniversary t-shirt will be given at an additional pledge of $25.
Additional prize levels start at $100. Top prizes will be awarded to highest pledge raising individuals and teams.
GET INTO THE LOOP! VISIT WWW.LUPUSPA.ORG FOR FUNDRAISING IDEAS AND TO START YOUR PERSONAL ONLINE FUNDRAISING PAGE TODAY!
Our Mission:
TO PROMOTE AWARENESS, EDUCATION, SERVICE
AND RESEARCH FOR THOSE AFFECTED BY LUPUS.
Donor Option
Pittsburgh Branch
Landmarks Building
100 West Station Square Drive
Pittsburgh, PA 15219
LUPUS FOUNDATION OF PENNSYLVANIA
NON-PROFIT ORG.
U.S. POSTAGE
PERMIT #1945
Pittsburgh, PA