By Barry A. Hendin, as told to Rachel Reiff Ellis
If you’ve lived with MS for a while, there’s good reason to look to your future with hope. MS therapies are rapidly advancing, knowledge is rapidly advancing, and quality of care is rapidly advancing. People with MS can look forward to an entirely different future than they could years ago.
I’m chief medical officer at the Multiple Sclerosis Association of America (MSAA). Our focus is on what can be done to improve lives now, educate people better about their MS, and provide a wide range of MS opportunities.
Here are some ways to be more involved in your own care and in the future of MS as a whole.
Deepen Your Care Team
We’ve become much better at understanding how care of the whole person impacts the disease short term and long term. That includes what it means to exercise, give up things like smoking, treat comorbidities, eat a healthy diet, and pay better attention to the mental health issues people face with MS. Psychological and psychiatric issues matter, including those due to circumstances and those due to the biology of MS itself.
That’s why a team approach to MS management isn’t just good, it’s necessary. When we as neurologists see people with MS, it’s not enough just to say, “When was your last MRI? When was your last relapse?” We need to know about your bladder, your mood, your work, and your social situation. And then you need to be able to address those issues. That takes a village.
That means psychologists, psychiatrists, urologists, physiatrists, physical therapists, occupational therapists, and social workers. It’s really the minimum requirement.
Learn More About Your Disease
We’re discovering more about MS all the time. Knowing more about your disease can help you ask more and better questions of your care team, understand where current research is focused, and build hope as you learn of new advances.
One current focus is on the Epstein-Barr virus, and whether it’s a trigger for the disease.
We’re also researching what causes acute relapse to get a better understanding of why so many people who are treated successfully for relapses still go on to progress.
We've not been very good at treating late or progressive disease that we call PIRA, or progression independent of relapse activity. But now it looks like we have our first agent that has been successful in non-active secondary progression, a great breakthrough.
Enroll, Volunteer, Advocate
In 1992, there were zero disease-modifying therapies, and zero opportunity to change the outcome of MS once you were diagnosed. Now there are more than 25 disease-modifying therapies. All of these advances to date have come from people willing to be in trials.
You can be a part of MS research, too. If you have a neurologist with an MS focus as opposed to a general neurologist, they’ll have knowledge of the available research opportunities, because most of us either are actively engaged in research or know what's out there. They’ll also be able to tell you if you’re appropriate for certain trials.
Look to MS organizations, such as MSAA and the National MS Society, for MS research projects and to find MS-focused neurologists. You can also help further their mission with your time. They're thrilled to have organizational support. Or if your MS care happens in an MS center, ask if there are opportunities to volunteer. It's a way to help not only yourself, but the whole community.
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Photo Credit: fizkes/Getty Images
SOURCE:
Barry A. Hendin, MD, chief medical officer, Multiple Sclerosis Association of America (MSAA).
