The Importance of Quality Education in MS

MS Cure Fund Announces Two National Patient Education Programs

Written by:  Jack Cowie

Multiple Sclerosis education.  Sounds like a bit of an oxymoron.  How do you educate about something that cannot be exactly diagnosed or defined?  Bottom line – you keep trying.

MS Cure Fund had the opportunity to participate in two national conferences recently that define excellence in education.  For those of you who are not aware, there are thousands of extraordinary doctors, nurses and academic researchers who have dedicated their professional lives to becoming better educated about all things MS to improve the ultimate outcome for you, the MS patient.

The first event was the annual meeting of the American Academy of Neurology (AAN).  AAN was full of some of the most brilliant women and men you can imagine.  Primarily for neurologists and researchers, we saw presentations that seem like science fiction, but they’re not.  The rumors you hear about remyelination (repairing damaged nerve linings) and new medications in development for primary progressive MS (PPMS) are true.  They are coming, but never fast enough.

The second was the annual meeting of the Consortium of MS Centers (CMSC).  CMSC is an educational powerhouse.  Top neurologists and researchers provide seemingly endless continuing medical education (CME) sessions to thousands of doctors, nurses and med students.  Some of the most amazing meetings we had were with nurse practitioners.  These women (the one’s we met were women) are where the research meets the patient.  Not that neurologists aren’t patient understanding (need to be careful there), they are.  But nurses make the world go round.  We met a nurse practitioner, with whom we will be doing patient education, who brought a passion for patient care and patient advocacy that is unsurpassed.  It makes hope possible when we participate and work with such committed and intelligent providers.

MS Cure Fund is also doing its part to give you, the person living with MS, access to the very best information and education possible.   MS Cure Fund has created the first ever series of nationally standardized patient education programs (PEPs).  MS Cure Fund sought out the very best possible authors to create presentations on two critical topics; 1) “The Risks & Benefits of switching your MS therapy – How, When and Why to talk to your doctor”; and, 2) “Women Thriving with MS – How to be a Partner, a Mother, a Woman . . . First.”

Why is this significant?  Have you ever heard one neurologist contradict what another has said at a patient event?  We have, a lot.  With the ever increasing number of choices available for treating MS with disease modifying therapies (DMTs), when to talk to your doctor, why you should talk to your doctor and how you should approach the subject with your doctor, becomes critically important.

The second program, “Women Thriving with MS”, is intended to address being a woman first and an MS patient second.  It is about having a life.  About planning to be a mother, have a career, live a good life.  And equally important, to take care of yourself.  Get regular care outside of MS.  Learn how to distinguish MS symptoms from menopause issues.  Seventy-three percent (73%) of MS patients are women, so a national education tour addressing women’s health cannot come soon enough.

Well, hopefully June 16th & 17th, 2015 are soon enough.  MS Cure Fund will be in Los Angeles working with the USC MS Center and Regina Berkovich, M.D. and Nurse Practitioner Leslie Tarlow to present the Risks & Benefits program on the 16th at Maggiano’s the Grove, and Dr. Berkovich will give and encore performance the following evening on the Women’s Thriving program at the same location.  Then it is off to Seattle June 22 & 23rd; then Chicago, Denver, San Antonio, and on and on.  MS Cure Fund will bring these nationally standardized education programs to at least 26 cities around the country in 2015.  As we book programs, we will get them up on our website as soon as possible.

For all of you in the Northeast who have been our support and foundation for the last ten years, you are not forgotten.  The staff at MS Cure Fund is working tirelessly to schedule quite a few patient education programs in our home area.  From NH to CT to Albany, stay in touch with the Event Calendar at www.wecare.mscurefund.org for late breaking dates throughout New England and eastern New York.

Lastly, I want to share with you some sage advice we heard from a long time industry professional.  We were in a meeting where we asked, as we always do, “what do you think is important to get out there for patient education?”  The answers were so simple, yet so right on target.  The first was men.  Men don’t talk about having MS.  Men tend not to ask for help.  Yet MS in men is usually more aggressive physically.  Yes, 73% of MS patients are women, but that does not lessen the importance of every MS patient, and none should be ignored.  We heard that loud and clear and we will endeavor to do better in male specific information and education.  The second was making sure MS patients are very aware of potential co-morbidities and making their doctors (any and all) aware of other health issues like hypertension, high blood pressure, diabetes, and depression, among others.  Not disclosing all health related (including mental health) issues can lead to less than optimal outcomes, and in some cases can be life threatening.  We are eternally grateful for the constant input and offerings of help and support we receive nearly every day that can improve the lives of people living with MS today.

Send thoughts, additions, criticisms to jack@mscurefund.org.