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Jim Broutman’s MOGAD Story: Opening the Door to a New Lease on Life

Jim Broutman with dark hair and brown eyes smiling and wearing a salmon colored button down shirt.

During my career as an entertainment publicist nothing compared to the excitement I felt when I booked a client for the cover of a prestigious Magazine.   I was in my element and at the top of my game, I was running a successful PR firm and I was happy…and healthy.

Back then I didn’t realize the importance of good health and how that contributed to my overall happiness at the time, but I certainly do now.

In November 2016 I experienced back pain that kept me in bed for days at a time, when I would get out of bed to use the bathroom, I had a hard time urinating.  I was 54 years old and thought perhaps my prostate needed to be checked.  I went to the hospital where they inserted a catheter and scheduled an appointment with a Urologist for the following day.  I awoke the next morning, tried to get out of bed only to fall…my legs completely went out on me.  I got up and fell again.  I couldn’t feel my legs…this never happened to me before.  My husband came home from work and called 911, I was taken to the closest medical center where they proceeded to run several tests.

Upon reviewing the tests, the doctors diagnosed me with transverse myelitis, something I’d never heard of before.  The doctors described the long lesions found in my spine, which explained the back pains I was experiencing along with the temporary paralysis.  They mentioned the discovery of brain lesions detected in my MRI and recommended that I get checked for MS (Multiple Sclerosis).

The doctor explained that the transverse myelitis was likely an immune response to a recent cold I had, he prescribed steroid infusions for 5 days which helped ease my back pain, and within 3 days I started to feel my legs again. 

Although I was feeling better again, a friend suggested I see a specialist Dr Benjamin Greenberg at UTSW who has experience dealing with transverse myelitis.  He told me I had a few lesions and that it could be MS so we would just monitor it for now.  He thought I would recover over time and although I felt improvements for 5 years, I never fully recovered.

A year after my first attack, my left eye started to hurt.  I recently had dental surgery, so I thought that was a result from having surgery.  The eye pain got worse every day to the point where I could barely lift my head.  My field of vision also began to shrink.  I made an appointment to see my Primary Doctor who referred me to an Ophthalmologist.  I am very thankful to this doctor and feel he’s the reason I’m still able to see.  He told me I had Optic Neuritis but not to rule out MS.  So, I went to see a local Neurologist who confirmed a diagnosis of MS and started me on treatment right away.

During one of the rounds of monthly blood tests, there was a test ordered for Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), lucky for me, this test for the MOG antibody had just been developed.  It wasn’t even a known disease at the time of the first attack that I experienced.  I found out that MS treatments can exacerbate MOGAD so we stopped treatments immediately.

Next step was to find a MOGAD expert, which led me to Dr. Sean Pittock at Mayo Clinic.  Dr. Pittock noted there was a 1-year interim between my attacks, he also suggested we keep an eye on things and monitor to see if anything else happens.

At this point it’s 2018, I retired early and was put on disability.  I made the decision to become a patient advocate for MOGAD and to help others who are trying to figure out this mystery disease.  With the support of friends and family, I raised money for Dr. Pittock’s MOGAD Research Foundation through Mayo Clinic.  I also joined the Board of a non-profit dedicated to the MOG Anti-Body Disease called The MOG Project, happily took on the most important role I’ve ever held as CMO (Chief Media Officer) where I could use my previous skills in PR to help raise awareness.

Jim is smiling, in sunglasses and wearing a shirt that says The MOG Squad, mogproject.org.

Little did I know how much my role at The MOG Project would change my life forever!  Not only have I met the most amazing group of selfless and brave patients, selfless caregivers and the most amazing Drs all over the globe  thru The Mog Project but I now have a global connection and presence in the MOGAD community assisting fellow patients worldwide adjusting to their diagnosis, assisting Pharmaceutical companies with their outreach and working with other MOGAD non profits in connection with The Mog Project.

During the next few years, I seemed to be ok for the most part until February 2021 where I had another episode of optic neuritis (inflammation of the optic nerve).  I was given an extremely high dose of prednisone for 3 days followed by an 11-day taper which helped restore my vision.

Since that occurrence, it seems anytime I was tapered off steroids, I suffered another attack and temporarily lost my vision until it’s brought back by another high dose of steroids.  That’s why I was on high dose steroids for 18 months.  Although the side effects from steroids can be tough, this medication is “gold” because it helps restore my vision!  Yes, “roid-rage” happens…you experience a wide-range of emotions from happiness to sadness…you might gain a few extra pounds…but I dealt with it the best I could with a lot of help from friends and family.

I have also been blessed with the most amazing caregiver! My husband and best friend Kevin!  I CANNOT express my gratitude and love for him and his incredible patience and kindness towards me always! The shit he has had to deal with especially while I was on high dose steroids is beyond anyone’s imagination!

Jim and his husband Kevin posing with their index fingers over their mouth as if to say "shhh" with NoHate makeup painted on their face.
Jim and Kevin nealing down with their dog smiling.
Jim and Kevin in front of a pool standing and smiling.

In July 2022, I was one of the first patients to enter the first-ever clinical trial for MOGAD  called The CosMog clinical trial which is sponsored by UCB Bio Pharmaceutical and is a weekly injection of a drug called Rozanolixizumab!

Thanks to Dr. Michael Levy from Harvard University and Mass General Hospital, I believe his studies and research will change the world and give hope to others suffering from MOGAD. 

Jim and Dr. Michael Levy in Boston at the Neuroimmunology Clinic and Research Lab.
Jim and the Clinical Trial Team in Boston.

Now 19 months later I’m so thrilled to be stable with no relapses or side effects from my clinical trial drug “Rozanolixizumab”and SO relieved to be free from the FEAR of relapsing!  

This year for MOG Awareness Month I am even more committed than ever to raise money for the brilliant doctor who started me on the CosMog clinical trial. 

Dr. Levy is looking for answers while discovering the mysteries of MOGAD.  I am confident that he will be instrumental in developing more effective and safer therapies.

I truly believe that all my prior work and life experience led me on this path to work alongside with the doctors, scientists, researchers, and patients worldwide and to help anyone affected by MOGAD, the patients, families, friends, and caregivers.  It’s an eye-opening experience that I wouldn’t trade for anything!

Please help me help others by giving the gift of a donation to a cause that means so much to me.

You can donate online through the link below:

www.mogresearch.org

Or you can send a check to the following address below:

Massachusetts General Hospital with “MOG Initiative” in the memo line.

MGH Development Office
Attn:Kylie Baruffi
125 Nashua St, Suite 540
Boston, MA 02114

Jim Smiling and wearing sunglasses and a blue rainboow gradient shirt.

By Jim Broutman, Chief Media Officer, The MOG Project