Ways I Contribute to Conquer MS

I was diagnosed with relapsing-remitting multiple sclerosis in February 1996. I was a young 36-year-old at the best time in my career as an athletic trainer. Despite my diagnosis, I kept moving forward and looked to medicine to manage my disease.

At the time, there were only 3 disease-modifying therapies (DMTs) on the market. I tried Avonex and in 2000 added Novantrone, a neoplastic immunosuppressant anti-cancer medication. Unfortunately, neither were all that helpful. But it was then I decided while perhaps I couldn’t be in the lab creating and researching new DMTs, I could lend my body, my broken nervous system and all, to help researchers decode the mystery of MS.
In September 2003, I went to Northwestern University Hospital in Chicago to enroll in a clinical study on bone marrow transplant. I was willing to take the risk of this experimental therapy in the hopes that at the very least, it could slow down or possibly stop the progression.

Things took an unexpected turn when I was rejected from the study because they felt my MS was too advanced. The neurologist on the team told me I had primary progressive MS (PPMS). It was the first time somebody verbalized that I had a form of MS for which there were no therapies available.
It felt like they were telling me to go home and make the best of it because they had nothing to offer me.

It hit me like a ton of bricks. At the time, there was nothing available for me. Nothing. Not a single drug. I was left to progress with this disease and wonder what my future would hold. The worry. The uncertainty.

The emotional toll of having PPMS sometimes feels like I am on an island all by myself.

I am constantly being told by folks—people who mean no harm and are just trying to be helpful—about someone in their lives who has MS and are taking one of the many DMTs now available. I thank them for their suggestions rather than attempt to explain that for people with PPMS, that was not an option.  

Because up until March 28, 2017, we had no treatment available.

The silver lining to that visit to Northwestern was being advised to see a certain doctor at Johns Hopkins (JH) in Baltimore. He was doing some research that may offer me some options, and I eagerly set up an appointment. That was December 2003, and our relationship continues to this day.

I’m known as a bit of a research fanatic. If there is a trial that I can enroll in, and I have the blessing of my doctor, I enroll. In December 2005, JH offered a drug trial using Rituximab. Although researchers found no benefit for PPMS, the drug showed benefits for relapsing-remitting and secondary progressive MS
PPC-2017.JPGSometimes the feeling of isolation of PPMS extends even to research. Until about 5 years ago, there were very few clinical trials for PPMS and even fewer drug trials. Luckily, I’ve had the opportunity to enroll in research trials through the National Institutes of Health (NIH). I give my body to science and research because it’s what I can give.
I am not anonymous; I am not just a number. I am a resilient person who happens to have a chronic disease. Participating in trials offers hope, for which there is no price tag.
I participate for all who came before me and for those who will come after. Who knows where I would be if I had not volunteered for the trials. I am still trying to be productive and contribute to society and most importantly, maintain my independence.
Because I ask myself: if I am not for myself, who will be? If I am only for myself, what am I? And if not now, when?

New therapies and advances in public health have improved the quality of life and extended the lifespan of people in the US and across the globe. We invite you to share your story! Please post on your social media platforms a short video or a photo and a brief story about how research benefited you or a loved one using #ResearchSavedMe.
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Karen Jackson

Karen Jackson was diagnosed with MS in 1996. She holds a B.S. in kinesiology from the University of Maryland and worked as a certified athletic trainer for over 15 years. She now focuses her energy on advocacy and raising awareness for MS. She serves as a district activist leader with the Society and is an active member of the Virginia government relations committee.

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  • Avatar
    martyrocha  Oct 3, 2017 1:11 PM
    My brother died with MS at 25 and I dont know how to get his fund raiser for memorial services exposer.
  • Heidi   Oct 24, 2017 4:34 PM
    Thank-you! Without people like you how do we know what may or may not work. While I'm lucky and have RRMS (if you can call that lucky) its thanks to people like you that we have treatment options.
  • Cris Denney   Oct 25, 2017 12:53 AM
    I think you are awesome. Your attitude is inspirational. I have secondary progressive, I was very fortunate that there had been many people before me just like you, and because of that there were treatments available that may or maynot help with slowing down the disease, but there were treatments that did help with coping with the problems caused by MS. I too decided to participate in research, and have been a voluntary guinea pig for the research centre for ms in my state for the last 10 years. Thankyou for all your contributions. I'm glad for you that finally there is positive talk of possible assistive treatments for ppms. You're a champ!