My Silver Lining

I was diagnosed with relapsing-remitting MS (RRMS) when I was 36, in the prime of my life and career as an athletic trainer. I tried all three disease-modifying therapies that were available at the time but unfortunately none were helpful to me. In 2003, I traveled to Northwestern University hospital in Chicago to enroll in a clinical trial. It was a bone marrow transplant study and even though the therapy had a high mortality rate, I was willing to take the risk to help better understand and treat MS; but I was not accepted.

That was probably the toughest day in all my now 17 years of battling the challenges MS presents; not just because I was not accepted into the trial, but because it was the first time I was told I had primary-progressive MS (PPMS) — I now know that I had PPMS from the start, but because it manifested so slowly, no doctor was able to "label" me with it right away. Hearing I have a form of MS that is chronically progressive and has no therapies felt like being told to “go home and make the best of it” because they had nothing to offer me.
According to Rosalind Kalb, PhD, a psychologist and vice president with the National MS Society, those of us with PPMS have a different experience — physically and emotionally — than other people with MS.  I now use a wheelchair to ambulate and because of this and other symptoms, I have lost my spontaneity. Yes, everybody has to plan their days, but I plan every minute of every day — which is exhausting.  
The silver lining to receiving my PPMS diagnosis on that visit to Northwestern was learning about a neurologist at Johns Hopkins Hospital who was doing some research that may offer me options. I met with the Hopkins neurologist and he connected me to clinical trials for PPMS. We live not far from the National Institutes of Health (NIH), a world leader in research that invests around $115 million in MS research annually.

The NIH started a therapy trial for PPMS but there was one significant caveat: it was a double-blind placebo trial — meaning I may or may not be getting the real medication. There were also the physical components of the trial: MRIs, lumbar punctures, nerve conduction evaluation, blood draws and more. Despite these factors, I enrolled in the study; to me, the possibilities of new treatments and a cure far outweigh the risks. Even if the study doesn’t specifically help me, maybe it can help others with MS. The study was recently extended and participants — including me — are now getting the real medication… unless Congress cuts NIH funding and the trial is stopped.
Last September, I told this story — my story — at a briefing on Capitol Hill for members of Congress and their staff. I asked Congress to continue providing funding for medical research so that people living with PPMS like me can gain access to treatments, and so that one day we can find a cure and end MS forever. I became the “face” of PPMS to remind Congress that what is decided on Capitol Hill has a direct effect on real people. I am not anonymous; I am not just a number. I am a person living and working who happens to have a chronic disease.

As we speak, Congress is finalizing the Fiscal Year 2014 budget. Use this easy online tool to share your story and urge Congress to fund MS priorities including medical research.
Tags Activism & Advocacy, Progressive MS      13