“Staying Stoked
with Scleroderma”
single person who is touched by this
disease – the patients, the caregivers,
and the loved ones. I believe they
help me as much as they help
Stephen.”
In a miraculous 11 months after
diagnosis, Stephen returned to work
with full duty – no restrictions.
And he is “Staying Stoked with
Scleroderma.”
Until there is a cure, there is
the Scleroderma Foundation.
Through the Foundation’s patient
support services, awareness and
education programs, and funding
of medical research, the Foundation is leading the fight against
scleroderma.
Please help us to continue providing support to patients like
Stephen and their loved ones like
Michelle by making a gift to the
Annual Fund today.
Stephen Elrod with friend and colleague,Trever Martinusen
How Your Contribution Helps
Support. The Foundation is dedicated to providing a place for
those whose lives have been touched by scleroderma where they
can connect with others through an active on-line community, a toll
free Helpline staffed with knowledgable and compassionate people,
and by activities, events, fundraising initiatives, and community
awareness programs that happen throughout the country via the
Foundation’s network of chapters and support groups.
Education. Information on treatments and research initiatives,
conferences, brochures, and news publications, particularly the Foundation’s quarterly magazine, the Scleroderma Voice, are just some of
the ways that the Foundation educates patients, families, the medical community, and the general public about scleroderma. Public
relations and advocacy programs serve to inform the public and government leaders. These efforts are multiplied many times over by the
programs and services of chapters and support groups nationwide.
Research. The Foundation’s peer reviewed Research Program
makes available at least $1 million annually in grants to new and
established investigators. Grants from the Foundation have served
as “seed” money for many research initiatives that have grown into
large-scale studies with funding from the National Institutes of
Health. From these, new insights are made that may lead to the
development of therapies and, hopefully A CURE.
Scleroderma Foundation 300 Rosewood Drive, Suite 105 Danvers, MA 01923
www.scleroderma.org (800) 722 - HOPE
Stephen Elrod dreamed of being a firefighter his entire
life. In December 2007, when his dream came true he
and a group of his fellow rookie firefighters headed
to Costa Rica for nine days of surfing to celebrate
completing their probationary period. Shortly into the
trip, he noticed an increasing difficulty pulling himself
up on his board, and stiffening and swelling in his
joints. “There were awesome waves
that I couldn’t ride which confused
and frustrated me. I thought my fatigue was from existing on
Imperial beer, and rice and beans,” chuckled Stephen.
When he returned, his primary care doctor prescribed
diuretics and anti-inflammatories. When those didn’t work,
he was referred to a rheumatologist. “My brother, a nurse
who could ‘translate’ the medical jargon, and I met with Dr. Dinesh Khanna at
UCLA on May 28, 2008. He explained all the different forms of scleroderma and
broke the news that I had the worst case scenario, systemic sclerosis.” Stephen’s
reaction surprised even Dr. Khanna when he said, “it’s go time, let’s kick some
scleroderma butt.” And from that moment on, Stephen’s mantra has been
“Staying Stoked with Scleroderma.”
“I was not impervious to the stages of shock, however,” said Stephen. “Even
though training as a firefighter prepared me for anything and everything I may
face on the job, nothing prepared me to battle a potentially life-threatening disease both physically
and emotionally.”
Unfortunately, his firefighting aspirations were on hold. Unable to perform the grueling functions
of the job that he barely had time to even celebrate, Stephen was put on “light duty” after his diagnosis. But with all of the medical appointments, he quickly used up his personal time off. “My only
options were a leave of absence or catastrophic leave at that point,” he shared.
It was a diagnosis that took Stephen, his family and his colleagues by surprise, but if you know
anything about firefighters, it should come as no shock that he wouldn’t have to fight scleroderma
alone. The firefighter brotherhood – always ready to put everything on the line for others – lined up
to support Stephen. “They donated their sick time, their personal time, and their vacation time to
keep me insured and on the payroll during treatment and rehabilitation. It was so humbling to see
how quickly everybody in the department and the community rallied around me,” reflected Stephen.
It’s just one of the many ways that Bakersfield’s firefighters are trying to help Stephen get through
the ordeal of scleroderma. “We all pull together to help a fellow brother in need,” shared friend and
colleague Trever Martinusen.
Trever also rallied the troops to host “Staying Stoked with Scleroderma,” a benefit to help cover
Stephen’s mounting medical bills. “Even Dr. Khanna and members of the Scleroderma Foundation’s
Southern California Chapter came – I was blown away,” recalled Stephen.
It’s not just his firefighting family taking the time to care. Others are
reaching out too. “Trever’s wife, Shari, an occupational therapist, helped
me tremendously with rehabilitation,” said Stephen. “I wouldn’t be back at
work today if it weren’t for her and I will forever be grateful.”
Just two months after being diagnosed, Stephen and his dad attended the
National Patient Education Conference in Manhattan Beach, Calif. He, along
with wife Michelle, attended last month’s National Conference in Anaheim, Calif.
“The conferences are where you meet the people who want to fight, who want
to learn to live with this disease.”
He is also becoming very active with the Southern California Chapter, attending fundraisers and raising awareness of scleroderma. “I was reading the
Scleroderma Foundation’s VOICE magazine, and saw something about Vertical
Cure – a fundraising alpine ski event challenging participants to ski as many vertical feet as possible
in one day. I knew I wanted to get involved immediately, so I contacted the event organizers.”
Stephen pays it forward by helping others living with scleroderma. “People who have support are
the ones living more positively. It is sometimes hard to be humble enough to accept help but the
support helps you to not just survive but to live with scleroderma.”
“One of the things that keeps me going is accepting that my normal is not necessarily someone
else’s normal. And I have learned to live life as if in high-definition television - grateful for so many
more things in my life than before diagnosis. I am tremendously blessed by the people that have
rallied around me and that have become a part of my own circle of support. The people I’ve met
through scleroderma are rare gifts. Also, I think of the Scleroderma Foundation not as an organization but as a ‘people.’ Emotionally they have always been there for me – as important a part of the
team as my healthcare providers, firefighting brothers, and my family.”
Stephen’s wife Michelle shared, “The key for us keeping the momentum going is faith, hope, and
having a positive attitude. We are in awe of the support that the Foundation provides to every