Attracting physicians into research and clinical care focused on ADEM

How many of you with ADEM are being cared for by a physician who feels as though they have a good understanding of your disorder?  How many of you with ADEM feel like you are receiving the best medical care for all of your symptoms?  How many of you with ADEM are encouraged by the amount of medical research that is focused on your disorder?

To my knowledge, there is no specialist in ADEM anywhere in the world.  To my knowledge, there is no researcher focused on trying to understand ADEM, nor how to treat an acute episode of ADEM, nor trying to understand how to most effectively treat the very challenging symptoms that result from an ADEM attack.  There is no ADEM Center anywhere in the world. 

The future of those impacted by ADEM depends on our ability to attract clinicians and researchers into specializing in our disorder.

Spearheading our fight

Barbara Kreisler is the ADEM Support Group Leader of The Transverse Myelitis Association.  She and I are committed to creating greater awareness of ADEM so that those who have ADEM can have a better chance for a good quality of life after an attack.  The medical world needs to understand ADEM – Acute Disseminated Encephalomyelitis.  Currently, they do not.

We are creating a James Lubin Fellowship focused on ADEM.  
 
Over the years, I have been deeply moved by the people I’ve met who have ADEM.  Some people got ADEM when they were a child, others as a young adult, still others when they were in their 40s, 50s or 60s.  ADEM happens to both males and females and there doesn’t seem to be any racial or ethnic group more prone to getting ADEM.

There are such compelling stories from people who’ve been affected by ADEM. Their experiences magnify just how little is understood about the brain.  Their symptoms reflect these mysteries of the brain and the seemingly random medical events which befall those whose brains have gone awry from the inflammatory attack and damage to the brain and spinal cord.  

Their Personal Stories

 It seemed like overnight, I turned from able bodied to disabled.  Suddenly, I couldn’t read, write, remember my grandchildren’s names, walk — and do lots of other things that define who I am.  I was hospitalized. My condition confounded physicians.  Physical and occupational therapy and sleep filled my days.   I had to relearn the alphabet, how to write, read, how to manage the paralysis to my left side. Still no diagnosis.  Then a neurologist recalled a case he had years ago. Finally, he gave my condition a name -- ADEM – Acute Disseminated Encephalomyelitis. Now, four years later, my balance is unpredictable so I walk with a cane. My handwriting isn’t entirely legible, my computer skills are unreliable.  I depend on my husband for everyday tasks.  Mental and physical energy has diminished. Otherwise, there are no visible signs that I suffer from the effects of 13 brain lesions.  I miss having the energy to write for hours, being able to drive a car, walk independently, the ability to concentrate. Nevertheless, I consider myself as one of the lucky ones who have ADEM.  BK

Similarly stricken, others with ADEM are left comatose and paraplegic or quadriplegic or vent-dependent.  Total recovery is elusive.  ADEM is a devastating disorder. 

Rachel still is unable to talk clearly enough to use a phone.  However, we can understand her a bit more every day.  From what I have read over the years, we believe that she had one of the worst cases of ADEM.  Rachel came home from rehab three years in January, at which time she still could not get in and out of bed by herself or use the wheelchair; now, she does all that and even more.  She will be starting exercise and writing classes at the local college, and will be getting fitted for a pallet prosthesis to see if we can improve her speech.  It took us two years to find a speech therapist who understands this disease. She believes this lift will help. I don’t have to tell you how much we searched for ideas and assistance in figuring out what will help Rachel get better.  JE (Rachel’s mother)

ADEM is a rare disease.  ADEM was once considered a childhood disease.  We now know that it strikes people of all ages – and in remarkably different ways. That’s why it is so baffling.
           
Stephen was in the hospital for over three weeks; everyday getting worse.  Everyday was a different diagnosis.  First it was a brain tumor, and then it was West Nile, Autism, MS, Meningitis.  He had CAT scans, spinal taps, blood tests, a urine test, EKG, EEG. The last spinal tap was positive for Lyme’s Disease.  He was scheduled to have surgery to administer his antibiotics at home.  The health and neurology departments, however, had conflicting diagnoses.  The health department thought it was Lyme’s Disease, and neurology thought it was ADEM.  Finally, his MRI showed over 20 lesions, but they said that there was nothing to do to treat them.  So, together, we agreed to start him on steroids.  By this time, he couldn’t walk, talk, sit up, go to the bathroom, or swallow very well.  The doctors said he might not ever do any of these things again.  Within three days he started to eat, walk a little and make more sense when he talked.  After weeks of therapy, hospital visits, and doctor visits, he was on the road to recovery.  It is two years later, and Stephen is a happy kid, running on his own, laughing and loving school.  He has speech therapy, physical therapy and occupational therapy, and he keeps shocking everyone with his progress.  I truly believe he was a miracle.  I read sad stories of people who are permanently disabled from ADEM and it is horrible to imagine what some go through.  Sometimes I feel guilty that he did so well; that you would never know he was ever sick.  Stephen’s story is a happy one, and there is hope for people with ADEM to live a normal life.  KD

An inflammatory attack in the brain leaves people with incredibly difficult symptoms.  Finding the causes of ADEM is going to be a very challenging journey.  The first step in this journey begins with the recruitment of physicians into this specialization.  Without attracting physicians and researchers into this field, there will be no journey at all. 

If you have ADEM or if you are a family member of a person with ADEM, we are going to need your help to take this very first step.  And the help must come from you.  It is exceedingly difficult to raise funds for very rare diseases.  Most people support those causes that have directly impacted their lives.  The general public is not going to come to our aid on this endeavor; help is going to have to come from you and from your family and friends; the people who best understand how ADEM has impacted your life and the lives of your families.

The James T. Lubin Fellowship in ADEM

Recently launched, the ADEM Fellowship was created to encourage the development of a medical specialization solely focusing on ADEM.  The Fellowship will fund one or two academic years of study under a transverse myelitis specialist who has experience with ADEM.  The fellowship will encompass both research and clinical care. The mentor will be a faculty member with demonstrated clinical specialization and practice in ADEM or transverse myelitis.  Preference will be given to medical centers of excellence focused on transverse myelitis.  If the fellowship includes a research program, the mentor must also be a scientist with research experience and publications in these rare disorders. 

We need your help to fund the ADEM Fellowship

To award an ADEM Fellowship, we must raise $100,000 for each year.  While our initial goal is $200,000, we are going to want to be able to attract a number of physicians and researchers into this discipline.  If you have ADEM, or if you have a family member or friend who has ADEM, you understand how the investment in this fellowship program will bring very direct and profound benefits.  We urge you to get involved in this fundraising effort.

If you have the ability to make a donation, we strongly encourage you to do so.  Please send your contribution to Paula Lazzeri, Treasurer, The Transverse Myelitis Association, 1787 Sutter Parkway , Redmond WA, 98052-3125.  Please be sure to indicate that your contribution is for the James T. Lubin Fellowship for ADEM.  Your tax deductible contribution will be appropriately acknowledged. 

Even if you don’t have the ability to make a donation, you can make a difference.  Please send us the names and addresses of friends and family members that we can include in a fundraising campaign.  These are the people who have the greatest appreciation for why we need to raise money for the fellowship and for ADEM research.  If you do not want to send us this contact information, we would be grateful if you could send the fundraising letter yourself.  You can send me an email request, and I would be pleased to send you a copy of the letter for you to mail.  We would also encourage you to seek donations from medical specialists, allied health care providers, and medical equipment providers that you have relied on and with whom you have developed relationships.  Please also involve any organizations and clubs that you belong to; and please think about sponsoring your own fundraising activities to support the fellowship.  We would be glad to help you with ideas. 
No one else is going to do this for us.  They have their own causes, and their cause is not ADEM.  We have to do this for ourselves.  Please make a donation if you can.  Please consider sending us your contact lists.  If you are reticent to do so, we urge you to send the fundraising letter yourself.

Thank you for helping us to help you!
Barbara Kreisler and Sandy Siegel