MS Can’t Take Away Hope
Multiple Sclerosis and Hopes For a Cure
08.02.13 | By Preet Bilinski
We recently released our Medicines in Development for Neurological Disorders report, which includes 38 medicines for multiple sclerosis (MS). It is a condition that impacts approximately 500,000 Americans. We recently had an opportunity to speak with Jodi Dwyer, a health activist who has MS and hope for a cure.
MS Can’t Take Away Hope
What were your thoughts when you were first diagnosed?
I was diagnosed with MS on Friday, September 26, 2008. I can remember the moment like it was yesterday. When I heard the words, "You have MS" I was in shock. Not only did I not know anyone with MS but I couldn't believe that I was "sick." Unlike many others, my diagnosis with MS happen very quickly. I had my first major symptoms the day before hearing the news. I consider myself lucky to have found out so quickly so that I could start treatment immediately. I now know many others who took years to find out their diagnosis. Not only must that be completely frustrating to not know what is wrong but it is critical time that you could/should be on treatment.
What is it like living with MS? How has it changed your life?
Living with a chronic illness like MS is in one word. . . unpredictable! Quite honestly I never know what each day is going to bring. Some days I feel great and others not so much. Fatigue is my worst and most regular symptom and it can come out of nowhere. It is a challenge with working full-time and leading a full and active life. But at the same time my life is what I would consider to be "normal." One of the reasons I blog is to show that despite MS I lead a busy life doing many of the same things I did before being diagnosed.
What led you to start your blog?
When I started my blog it was with the intention of keeping my family, friends, supporters and donors up to date about my MS journey. I wanted to tell people about the MS events I was participating in and thank them for donating to my fundraising. As I became more comfortable sharing my story I started sharing more about my life with MS, dealing with symptoms, giving myself injections weekly and raising awareness. I figured if I didn't know much about MS prior to being diagnosed it was likely that many others didn't either. I could raise awareness about MS while showing it is still possible to live a full and active life. Additionally, I used my blog as a way to connect with others who have MS. When I was first diagnosed (about 1.5 years before I started my blog) I couldn't find any blogs written by people with MS. I hoped that my blog might help someone else who was newly diagnosed with MS. I am happy to report that I have since connected with many other MS (and other chronic illness) bloggers and made some great friends!
How does patient advocacy make a difference in your opinion?
Patient advocacy is so very important. I am the one living with MS - not my doctors. . . not the researchers. . . if I don't speak up about what it is like to live with MS how will anyone know? If I don't raise awareness about what MS is who will? If I must live with MS I will make the most of it and raise as much awareness and money as I can. Then maybe someday I won't be a "patient" and I can focus my advocacy efforts on something else!
How have treatment options for MS advanced?
In the almost five years since I've been diagnosed with MS there have been so many amazing advances in treatment options. I've said before and I'll say it again, if I had to be diagnosed with MS now is a pretty good time for it to happen. I think MS is a much different illness than it was twenty years ago and this is due to the treatments now available.
When I was diagnosed the only treatment options were injections. Now there are three oral medications approved by the FDA. Today when someone hears the words, "You have MS" they have a choice of treatments that includes taking a pill rather than doing an injection. That is huge! Take it from me - someone who did injections for almost five years. Not only is it amazing to have more choices but it is amazing that the treatments available now are literally changing the course of the illness. People are living healthier lives with less relapses. I've been relapse free since my original diagnosis. My neurologist, along with the majority of MS neurologists out there, feel that patients should be on treatment as soon as diagnosed. I would have to agree considering it has worked for me. I'm in the process of changing treatments to an oral treatment since I've had enough of doing injections. The oral treatments are showing to be just as effective at preventing relapses so I'm excited to be switching.
It is so important the research to find a cure for MS continues. I really believe we are on a verge of learning great things about MS but without continue funding for research we will not find the answers we need for a cure. This is why I continue to fundraise each and every day. In the almost five years since I was diagnosed with MS I have led my team, The Bean Team, in raising over $50,000 for The National MS Society Greater New England Chapter. We are a small team and this money is raised simply by asking family and friends to donate. It just goes to show that if you don't ask you won't get donations but if you do you'd be amazed at how generous people are!
What is your hope for the future?
My hope for the future is. . . a cure for MS! Until the day we find a cure I hope I will continue to live a full, active and happy life. I hope I will continue to do well on the MS treatments available to me. I hope I will continue to inspire others with MS and other chronic illnesses. I hope I will give others hope. MS takes away our control but can't take away our HOPE!
Jodi lives in Boston and is a clinical social worker by profession. Her hobbies include volunteering, traveling, blogging and spending time with her family (especially her two nieces). She is currently training and fundraising for the MS Challenge Walk. In September she will walk 50 miles in 3 days across Cape Cod with The Bean Team.