Sunday, July 31, 1994 at 5:30 in the evening… Pauline fell to the floor with excruciating pain in her lower back and was immediately and completely paralyzed below her waist. She spent nine hours in an emergency room. She did not experience a trauma and the emergency physician could not find any compression on her spinal cord to explain Pauline’s symptoms. He began to suspect that what Pauline was experiencing was psychological. Finally, when he discovered that her bladder was full and that she was unable to urinate that a neurological problem could be the cause. He immediately notified the neurologist on call and Pauline was put on a course of intravenous steroids which lasted for about five days. That was the sum total of Pauline’s acute treatment. She was in the acute care facility for a week before she received a diagnosis – Transverse Myelitis. Pauline was then transferred to a rehabilitation hospital where she received aggressive physical and occupational therapy for about two months. Pauline went back to teaching two kindergarten classes a day in January; in her wheelchair. She continued to receive aggressive outpatient physical therapy for two years. Pauline is my wife, I am Sandy Siegel, the President of the Transverse Myelitis Association.
When Pauline received her diagnosis, we were hearing the words transverse myelitis for the first time in our lives. We knew no one who had this disorder, we had no idea what Pauline’s future held for her. Could she die from this disease? Would she be able to recover? What did her future hold for her? We received no answers from Pauline’s doctors. They seemed unfamiliar with the disease. In fact, one of her physicians told us that transverse myelitis really wasn’t a disease, but rather, a collection of symptoms. We were frightened about what had happened to Pauline and we had access to absolutely no information to be able to educate ourselves about this disorder. There was no medical institution in the world that had a transverse myelitis center. There was not a single physician who specialized in transverse myelitis. There were no researchers doing any studies on transverse myelitis. And we felt entirely isolated and alone in this experience as we could not find a single support group anywhere in the world for people who have transverse myelitis.
While transverse myelitis is rare, Pauline’s experience was very typical for most everyone who received a transverse myelitis diagnosis before 1994. Children as young as four months of age can get transverse myelitis. Parents would put a completely healthy child to bed at night and wake up the next morning to a child crying in their crib totally paralyzed. People can get transverse myelitis into their 70s and 80s. The symptoms can be devastating for the individual and for their entire family.
Dick and Deanne Gilmur lived in Tacoma, Washington. Their 18 month old daughter was also diagnosed with transverse myelitis. Shortly after Pauline’s diagnosis, Deanne wrote an article for the National Organization for Rare Disorders Newsletter that announced an interest in developing a support group for people with transverse myelitis. I called Deanne and volunteered to help her with this group. We were driven to do this work by the ignorance we had experienced when our loved ones received this diagnosis. We were motivated by the fear and isolation we experienced in going through this experience alone and without support. We were inspired to do this work to encourage the research and the focus on clinical care that was not available for our loved ones when this horrible experience happened to them.
It was also at this time that the internet was just getting off the ground and becoming available to general consumers. I typed the words transverse myelitis into a web browser, and my first hit was the web site of James T. Lubin. Jim had experienced the inflammatory attack from transverse myelitis at the top of his spinal cord. He was a full quadriplegic and ventilator dependent from the time he was twenty-one years old. Jim became a brilliant and creative computer technician from the beginnings of this technology explosion, doing all of this work by sipping and puffing Morse code into an adaptive device. When America Online allowed members to set up web sites on two megabytes of space on their servers, Jim set up the first TMA web site. He also established the transverse myelitis internet club, one of the first list-serve groups on the internet. It was through the tmic that we found Deborah Nord Capen. Debbie got TM when she was in her 40s. She would later receive a diagnosis of Lupus.
The Transverse Myelitis Association was born through the experiences of these five families. It was through their passion and dedication and the experience of ignorance and fear and isolation that the mission of the Association was formed, and the mission has changed very little since our inception. It is imperative that when a person receives this diagnosis that they have immediate access to comprehensive and accurate information and support. It was critical that there be specialists in transverse myelitis and centers of excellence to offer the best clinical care and to perform research on this very little understood disorder.
People with Acute Disseminated Encephalomyelitis, Neuromyelitis Optica Spectrum Disorder, and MOG Antibody-Associated Disease are told by their physicians that the spinal cord inflammatory attack they experience from their disorder is referred to as transverse myelitis. From our inception, people with ADEM, NMOSD, and MOG Antibody-Associated Disease were joining the Association because they were told that they had transverse myelitis. There were no support networks for people with ADEM, NMOSD or MOG Antibody-Associated Disease anywhere in the world, and the TMA took on that responsibility. The TMA has become an international organization advocating for people with the rare neuroimmune disorders of the central nervous system.
Through the hard work, dedication and passion of a small group of volunteers, the TMA has grown to a membership of more than 13,000 people from more than 80 countries around the world. Today, there are specialists in the rare neuroimmune disorders and there are centers of excellence. We have established the James T. Lubin Fellowship to train clinicians and researchers in these rare disorders. We produce and disseminate publications to share information with our members and we conduct education programs for people with these disorders, their family members and the medical professionals who care for and do research on these disorders. We have a worldwide support network that is driven and directed by amazingly dedicated people who have these disorders and their families.
This is our story. There is much work that needs to be done. These disorders remain a mystery as very little is understood about their cause. There have been no studies to prove the best acute treatments and there has not been a single study to prove a drug for use in the treatment of symptoms in any of these disorders. But for a person who receives a diagnosis of ADEM, MOG-Ab disease, NMOSD, ON or TM (including AFM)… they no longer have to suffer the fear that comes from ignorance. They are no longer alone.
– Sanford Siegel, PhD
President of the Transverse Myelitis Association