The Confession

By Gina Hessburg

If you don’t like to talk about, deal with, or have feelings, I strongly hope you never have a health crisis. For if you go through a health scare, you will experience a large range of emotions that include everything from shame to rage. You won’t be able to control them, and they will take you out like a tidal wave. Better yet, others will run from them like they are a tsunami. You can feel like a lone survivor after the devastation.

I went through a phase where I laid awake at night asking myself and the universe what I had done to all of a sudden be fighting blindness as I watch others wash their Doritos down with a Coke? People say silly things like thanking me for sharing something so private as if having a health issue is something to be ashamed about. If we should be ashamed of anything as a culture, it should be for perpetually invalidating the way people feel physically and mentally. I did nothing wrong and didn’t deserve this path. I even checked in with Santa and Jesus Christ, and they said the same.

I have survived and not only continue to survive but thrive, because my own health protocol includes just sucking as much juice out of life in the here and now. While I fight for my sight, I have put to bed that the future may be very different for me; it may be very dark. But I don’t live in the future, and while I try to make good decisions that will help me down the line, I live in the now.

It has taken me some time to put this down on paper, and I have never once had a discussion about what life would be like for me in the future if I was blind. I mean, who wants to talk about that? Nobody, especially not me. But the reality of the possibility looms in the background.

There was a time when my mental state was not good, mainly due to Prednisone. I had plotted to hire a lawyer to get all things in order and I had intended to tell a dear friend that I would be considering taking my own life if I became blind. I didn’t want to live dependently and as a burden. Though I can’t grasp what life would be like for me without sight and I don’t want to think about it, I love my life and the people in it far too much to walk away from it. I intend to live, and when I use the word live, I do mean the action of living.

Yes, I have a blow-up doll (learn about my book about Rafael and passion project here), but I don’t have anyone to take care of me. I never really have, and I don’t think anyone knows what that looks like because the people who know me know that I just do everything my way and on my own. But when you feel like hell in a pandemic and your brain is defying you, you learn you have to lean pretty heavily on others even when it is hard to ask.

A few weeks ago, I took my niece out for some chicken wings and to go shopping. I used to always tell her that she has to take me out for pie when I am old, but this time the ask was bigger. I asked her, casually, that if I were to go blind and we had places to go, that she would make sure I had nice outfits and that my hair was combed. I asked that for special occasions, she would put red lipstick on me. She agreed; we discussed it no more and I bought her a big bag of salt water taffy as a reward for listening to her ridiculous aunt.

Recently, I was van camping with my friend Christian who invested a lot of time and resources into converting a van into a home. I made him promise that if I go blind, he would take me on a long trip to vineyards all over Washington and Oregon, letting me taste all the local wines. He promised and also told me he would describe all the scenery to me as beautiful even if it was a dump.

In these two conversations, there was an underlying secret agreement. There was an ask for help and a confession of fear. I asked, in other words, “if I go blind and it is hard for me to take care of myself, will you promise not to leave me?” It is these conversations that tell me I will be ok no matter what.

My admission is that I am afraid of going blind. I am very afraid of not feeling well or like my old self again. I am terrified of having to ever be on Prednisone again. But even more so, I am afraid of wasting anymore time in this sacred life and body not savoring every brilliant moment and every amazing person.

I realize this type of statement makes some people roll their eyes because they think I am full of crap. Yes, I don’t feel like this every day. I often do things like swear at and curse out other drivers for being in my way, but I am trying to put my sights on what is good…at least while I still have them.

Gina Hessburg was diagnosed with optic neuritis. She has had four optic neuritis attacks, the cause of which remains undiagnosed. She has lost most the vision in her right eye and is currently receiving IVIG treatment. Outside of working and being a patient, she has a personal goal of being a patent advocate, and she would like to use Rafael’s voice to get pharma to develop an alternative to Prednisone. You can read more about her story on her website here.

How Transverse Myelitis Impacted my Wife and Family

By Roderick Corpuz

It was the day after Mother’s Day. On that Monday morning, my wife Erin was experiencing numbness in her limbs, and she knew immediately something was wrong. We rushed to the hospital. She was unable to walk on her own. The doctors and the nurses in the emergency room (ER) did not know what was wrong with her. Unable to explain what the issue was, she was prescribed pain medication and discharged.

At that point, we did not know what to do next. We thought we were doing the right thing by going straight to the ER where they would have answers. We left with more questions, and my wife had more problems. She had to stay in our guest room, because she was unable to move on her own. Her loss of sensation had increased. She had lost control of her bladder and bowels. We had reached out to get another opinion, but we couldn’t get a neurology appointment until later in the week. Those next few days were terrifying because Erin’s condition wasn’t getting any better, and I was not prepared to take care of my wife in the condition she was in.

By the time we got to the neurologist (at another hospital), they immediately said that based on her condition, there’s a high likelihood that she would get sent to the emergency room again, AND that she would get admitted. They asked if we would still like to meet with the neurologist, and we absolutely did since we wanted to get answers. Within 15 mins of review, the neurologist mentioned the term transverse myelitis (TM), which we never heard of. They suspected that was the case, but would need to do further MRIs to confirm.

Later that afternoon, Erin’s diagnosis of TM was confirmed, and they started treating her symptoms once she was admitted. She was hospitalized for nearly a month, where she received medication and physical therapy to improve her condition. By early June, she had improved enough to be discharged, but with a long road to recovery ahead.

TM completely changed Erin’s life and our family’s life. Erin was an active yogi, recently certified as a yoga instructor, and ran her own nutritional business on the side. We have 3 children, Janie, Gwen, & Travis that she was a proud mother to. After her diagnosis, it hindered her ability to do any of those things. It could have crushed her spirits and discouraged her from getting better. However, that was not the case.

She was incredibly positive over the course of the last few months. Her mentality has been, she could have been much worse off if she wasn’t so focused on her health and fitness. Her yoga training and work habits gave her the proper tools to have the right mindset in her road to recovery. She has made significant progress, but understands there is so much work left to be done.

As she recovered, I took on more roles and responsibilities to manage our family and household, while I continued to work my regular job. Knowing the amount of stress that could add, she encouraged me to continue with my triathlon training. While races over the last year were non-existent, I was training, but with no short-term goal in sight. Inadvertently, triathlon training had prepared me physically and mentally for the stresses that were placed on our family. But most importantly, it was a source of stress relief and was how I focused on my own self-care so that I could take care of my family.

Which leads me to where I am now. The last few months have been a complete roller coaster. My wife has been a fighter, and has been an inspiration through it all with her attitude and positivity. We didn’t know where to turn to find more information outside of the hospital, until she found the Siegel Rare Neuroimmune Association (SRNA). SRNA has been Erin’s main resource for information to find out more about TM. It’s been a great connection to the community who have also experienced TM and similar conditions. For that reason, we are very thankful that SRNA exists. That motivated me to partner with SRNA and fundraise for them leading up to my participation in Ironman Atlantic City 70.3 on September 12th.

There is so much we don’t know about TM. We still cannot get past the fact that Erin was discharged from an emergency room, unable to walk, and this diagnosis was nowhere on their radar. Perhaps the situation would have been different if there was more information and knowledge about this condition. I would not want anyone to go through what Erin had to go through. My goal is to raise awareness about TM and other conditions like it, and contribute to SRNA’s efforts.

Thank you to SRNA for all the support you have given us, and the continued support ahead. I’m looking forward to raising money for such a great cause, and hoping we can do great things together!

You Are Not Alone

By Sandy Siegel, President of the Siegel Rare Neuroimmune Association

You are not alone …

Sunday, July 31, 1994 at 5:30pm. That was the very moment that life changed forever for Pauline. Life changed for me and for Pauline’s family and friends, as well.

And life also changed for all of you!

I can’t remember what I had for breakfast this morning, but I vividly remember so many of the events surrounding that horrible moment and all of what occurred afterwards. Most everyone who has gone through the onset experience from these rare neuroimmune disorders carries the traumatic memories from their experience in great detail. I know this for a fact because I’ve listened to many of you tell your stories while speaking with you on the home telephone in our kitchen.

I started to get this numb, tingling sensation in my right big toe that spread through my foot and up my leg. I started to feel an intense, sharp pain in my back. It felt like I was being stabbed with a knife. My bladder felt full but I couldn’t pee. And then I couldn’t move my legs.

I’ve listened to the stories over and over again. From the acute episode to rehabilitation to the many difficult symptoms that people experience after damage to the nervous system.

Pauline’s story is well chronicled on our website and in my book. If you have any of the rare neuroimmune disorders, I strongly encourage you to read the book, The Patient Experience with Transverse Myelitis. It includes everything I know for a mere $18. If you have a kindle, you get my thorough brain dump for $2.50 here.

Pauline spent a week in an acute care hospital receiving intravenous steroids. There were lots of doctors in her room throughout the week, and there were numerous tests done. She was totally paralyzed from the waist down and lost all bowel and bladder function. We had no idea at all what was going on. As Pauline was being moved to a specialized rehabilitation hospital for people who suffered a traumatic spinal cord injury or stroke, a doctor mentioned a diagnosis of transverse myelitis. She came into the hospital on a Sunday. We heard the words transverse myelitis for the first time on the way out of the door on Friday.

What is it? How did it happen? Could it keep happening? Was Pauline going to get better? Was Pauline going to get worse? Was Pauline going to survive?

Nothing. Not a thing. No explanation of the disorder. No explanation of cause. No prognosis.

Pauline spent the next two months focused on intensive rehabilitation therapy. She was so focused and worked so hard on her therapy. She gave herself little time or energy to be worried about much else. She was a kindergarten teacher. It was summer break. Her focus was on getting better so she could dance around her classroom like a butterfly in the fall. I, on the other hand, was focused on being worried about everything and being about as uncomfortable as a human could be with our total ignorance about what was going on.

I was working full time and was going home in the evenings to care for our two young teenage sons. On my way home from work, I would stop at the hospital to see Pauline. The doctors, nurses and therapists came to know me well. I was the nervous wreck who popped in every day to cheer on Pauline while she was working so hard and getting her head around the idea of being catheterized regularly and having no bowel sphincter control. It was apparent to all with eyes to observe that our heads were in a constant state of implosion.

Finally, likely out of sheer pity, a resident rehab doctor stopped me in the hallway to ask me how I was doing. I’ve learned over the years just how rare his gesture was in this situation. When a person goes through a medical emergency, such as the acute episodes from these disorders, all the focus is on the person with the disorder. The family members who are as much in a state of shock, are pretty much ignored by the medical professionals. I totally get it. They have more immediate concerns to deal with. The family, unfortunately, is drowning and they are rarely offered a life jacket. I have no idea what I said to him, but I remember like it was yesterday what he said to me. He told me that transverse myelitis was a symptom, a collection of symptoms. I’ve written extensively about the problematic medical nomenclature and the diagnostic mayhem associated with this notion, so I won’t get into it. Suffice it to say, I left that conversation with the idea bouncing around in my head that the person I so dearly loved was paralyzed, was unable to pee and had no control over her bowels from, as he put it, a “symptom.” I spent the following weeks with my head turning around on my shoulders like the girl in the Exorcist.

If I continue on with this story, I’m going to end up writing a 600-page article. I’ll stop. Please read my 600-page book.

Pauline and I started to learn that very little was understood about transverse myelitis. We also learned that there was no information available for people diagnosed with transverse myelitis. There was almost nothing in the medical literature, even though physicians have known about transverse myelitis for well over one hundred years. That wasn’t an encouraging sign. The doctors treating patients with transverse myelitis were basically operating by the seat of their pants. There was one acute therapy, and it didn’t always work. It didn’t work at all for Pauline. Rehabilitation was modeled after people who had traumatic spinal cord injuries or strokes. Symptoms were being managed by extrapolating from experience with multiple sclerosis and other neurological disorders. Most unfortunately, little has changed in that regard.

There were no specialists in transverse myelitis anywhere in the world. There were no medical centers with a focus on transverse myelitis. There were no support groups. There were no websites that included information about TM. In fact, there was no internet! If you wanted to read something that included the words transverse myelitis, you had to make a trip to a medical school library. And absolutely no research being done on transverse myelitis. It sure didn’t look like there had been any meaningful basic research on this disorder at all for over one hundred years.

Pauline and I felt so alone going through this experience. And we were so uncomfortable with how little we knew about what happened to her and what could possibly happen to her in the future. I heard it many times from Pauline, and from so many of you, that there was a deep fear about having to go through this experience another time. She didn’t know if she could handle it. I watched. I understood her fears.

Going through this experience in ignorance and alone was frightening and demoralizing.

By the end of 1994, we found Deanne and Dick Gilmur. Their 18-month-old daughter had been diagnosed with transverse myelitis. Shortly thereafter, we found Jim Lubin, Paula and Mike Lazzeri, and Debbie and Michael Capen. This was the core group who founded The Transverse Myelitis Association. We were The Transverse Myelitis Association because we had never heard the words acute disseminated encephalomyelitis or neuromyelitis optica or optic neuritis. That all came later. Not even physicians knew about AFM or MOGAD. That came much later.

Along the way, there was a whole legion of volunteers who contributed their resources, creativity, and energy to our cause. Geoff Treglown, Stephen Miller, Ursula Mauro, Margaret Shearer, Ann Moran, Lew Gray … many, many wonderful volunteers. We operated as an entirely volunteer organization for almost twenty years. That was nothing short of a miracle. Most of us worked full time jobs and had families. We did all the work in our spare time, and we had no time or energy to focus on raising money to make all this work happen. We did what we could, and it wasn’t enough. We know how much more needs to be done, and now we are counting on all of you to help us make this critical work happen. I’ve said it so many times before … we need for you to help us help you!

Our focus from day one has been to provide as accurate and thorough information to our members as possible. To provide an education to the members of our community so that they can become the best and most effective advocates for their medical care. To foster a sense of community among our members by offering the most compassionate and caring support, as well as gatherings such as our symposia, walk and roll events, and family camps. To provide education opportunities to the medical community and to grow our discipline by offering fellowships in clinical and research training. To support and conduct the research needed to find the most effective acute and long-term therapies, rehabilitation strategies, symptom management practices and restorative therapies for all the rare neuroimmune disorders. And to support research to better understand these disorders.

What Pauline and I experienced was horrible, and the tragedy was intensified and magnified by having to do it alone. It sucked beyond belief.

That this happened to you is horrible. It is a tragedy and it sucks, however you slice and dice it. There’s no putting a smiley fact on this experience. Period.

But … you aren’t going to go through this horrible experience alone. Like ants, bees, and gorillas, human beings are very social creatures. We depend on each other.

Being diagnosed with ADEM, AFM, MOGAD, NMOSD, ON or TM is going to be one of the most, if not the most difficult experiences you are going to have in your life. That SRNA exists means that you won’t have to go through this experience alone. You aren’t going to be totally ignorant about everything that is happening to your body or what can be done about it. You are going to have some sense of what the future might hold for you and your family. There are going to be specialists in the medical community who understand something about these disorders. There are researchers trying to understand them better and to find ways to improve your quality of life. You will be able to meet others who understand what has happened to you better than anyone else, and they will be there for you any time you need a compassionate shoulder to lean on.

That is all a very big deal. I know. Pauline knew, because we didn’t have any of this when it happened to her. None of this would have been possible without Pauline. She will always be the reason there was a Transverse Myelitis Association and now a Siegel Rare Neuroimmune Association. Her memory should be a blessing.

You are not alone.

Jeremy’s Farewell

By Jeremy Bennett, former Community Partnerships Manager at SRNA

Four years ago, I was at a Panera Bread sitting across a table from a man I had never met before. His silver hair was pulled back into a ponytail. He spoke with an energy that invoked more kindness than authority. I could immediately see why people were drawn to him. In this case, we were discussing potential roles within what was then known as the Transverse Myelitis Association.

Our scones were crumbs and our coffee was cold by the time we parted ways that day. Since then, I have heard him joke about his two-hour interviews. This is the way with Sandy — and why this organization has thrived for 25 years.

A few weeks later, I had dinner with him and his wife, Pauline. It was the first time I had met someone else with transverse myelitis. I wrote about this experience in my Hope Ambassador story, so I won’t rehash it here other than to say that night is what ultimately led to my decision to do this work and why it is so difficult to walk away now.

After my diagnosis in 2012, I found comfort in volunteering at the welcome desk of a museum in Seattle. I had been out of work for two years and was finally at a point in my recovery where I felt like I needed to be around people again. These disorders can be so isolating. Sitting at a desk and answering questions seemed like a low-stakes entry back into society. What it ended up being was a door to a version of myself I didn’t think was possible. I fell in love with the museum world and eventually found myself holding a master’s degree in museum studies.

My plan to rule the museum world got put on hold after meeting Sandy, Pauline, and the rest of the staff. I could not turn down an opportunity to help others find hope, care, and comfort, and I hope that I was able to do that in these past four years. I’ve met the most amazing people during this time. I’ve watched our support groups not only grow in numbers but grow in the way the members continue to lift each other up through difficult times. I’ve made lasting friendships with my co-workers and people in our community. I went from knowing one person with transverse myelitis to knowing hundreds.

This work isn’t always positive though. It’s seeing people at their lowest. It’s receiving calls of loss. It’s reading emails of struggle. It’s meeting people in tears. And I’d be lying if I didn’t say that takes a toll. If you are reading this and you were one of the people who are described above, please know that it mattered to me. I felt every sadness and did my best to help. And the people in this organization will continue to do their best after I am gone. It’s part of the DNA.

As for me, I recently moved to Colorado and was presented with an opportunity to help in a different way. The United States Olympic & Paralympic Museum opened, and the door back into the museum world was unlocked. I felt like I had to finish what I started back in Seattle, so I started working weekend shifts. On my first day at the museum, I was reunited with a family from the SRNA Quality of Life Camp who were in the area for a wedding! I knew then that I was in the right place. I could help promote the Paralympics (where a number of people with rare neuroimmune disorders compete) and would continue to have surprise encounters with members of our community.

This is one of the most difficult decisions I’ve made. I am going to miss my work here, but once you are a part of the rare neuroimmune disorder club you can never truly leave. I am forever tied to this community and will continue to stay involved as much as I can. I plan to attend events and help out as a volunteer.

In the end, I want to thank Sandy for guiding me through this work. His voice was always in the back of my head. Thank you to Angel, Chitra, Debs, GG, Jim, Krissy, Linda, Rebecca, and Roberta for their support throughout; to all our support group leaders and volunteers who devoted countless hours to our cause and who I have developed genuine friendships with; to everyone who has attended a meeting, camp, symposium, Walk-Run-N-Roll; and, to all of those who called or sent an email and trusted me to help.

My world is bigger and better because of you.

Be well,

Jeremy

TM to Ironman

By Alyssa

My name is Alyssa, I live in Chicago, I am 27 years old, and I was diagnosed with transverse myelitis (TM) in March 2011. On June 27th, I will be participating in the Ironman 70.3 Steelhead in Benton Harbor, Michigan, which will include:

  • Swimming 1.2 miles
  • Biking 56 miles
  • Running 13.1 miles

Why is it important to you? 

I have always enjoyed being active — running, biking, golfing, tennis, and yoga. In 2012, I was training for my first registered race; however, it was cut short when I was diagnosed with TM. This diagnosis abruptly put my passion for being active on pause. Instead, I was focused on re-learning how to do simple activities of daily living independently. TM was the toughest physical and mental challenge I have ever encountered. I was fortunate to receive an early diagnosis and be put on the correct treatment plan, and, as a result, I have made a full recovery. Unfortunately, many individuals diagnosed are left with moderate to significant impairments.

What is your goal? 

  1. Raise $5,000 by June 27th, which will go towards building awareness and advancing research for rare neuroimmune disorders, such as TM.
  2. Show people the importance of being “… less than 1% afraid” and conquering goals you set for yourself – big or small.
  3. Cross the finish line.

How did you feel when you first heard that you had TM? What thoughts or feelings did you have? Were you scared, lonely, relieved, confused?

Three days into my hospital stay, I looked out my window and watched as a young boy rode his bike alongside his mom. I embarrassingly felt enraged and jealous that the little boy had the capability to ride so freely. It was up until my diagnosis of TM that I too ran, biked, and swam so carefree. I knew there was no “cure” for TM, and I was fearful that I would never be able to do these activities again. My 97-year-old grandfather called that day and told me to, “…be less than 1% afraid.” After hearing those words, I made a promise to myself that I would never take my body and the ability to move carefreely for granted.

How has TM changed you and how your body or your mind works?

I feel fortunate that I received my TM diagnosis extremely early and that I was immediately placed on the correct treatment. Thanks to my doctors, after nine years, I no longer have any remaining physical or mental challenges related to TM. However, this diagnosis has changed my perspective on life for forever. It has made me more present, patient, grateful, and understanding.



What other facts about you (hobbies, favorite things, career, family, etc.) would help people get to know you beyond your TM diagnosis?

My TM diagnosis led me to my career in Occupational Therapy. I have now been working as an OT for two and a half years in an acute care inpatient hospital. My daily mission is to support individuals in their journey to being able to engage in their meaningful occupations, as mine once did for me. I had initially planned to complete this Ironman at my 10-year anniversary of TM. However, over the past year, I worked with many patients who were diagnosed with COVID-19 who unfortunately did not have the ability to see another year. These patients reminded me the importance of making the most of every day.

TM is a rare disorder which means it happens to very few people and chances are, you might be the only one in your community who has had TM. What does that mean to you being the “only one” or having something that many others do not?

Being diagnosed with a rare disorder has given me a whole new level of perspective. I am more grateful for simple things in life. It has also taught me the importance of advocacy, research, and teamwork. As Helen Keller once said, “Alone we can do so little; together we can do so much.”



To help support Alyssa’s Ironman fundraiser for SRNA, please visit her fundraising page here.



Diagnosed with Transverse Myelitis in 2018

By Erica Flowers

My name is Erica. On the morning of Thursday, July 12, 2018, I had just gotten home from a 6am basketball practice feeling as good as can be. The night before, I played two hours of club lacrosse, preparing for a major tournament that next weekend.

By 9am, I had quickly showered and changed for the day, but something felt off. My leg felt tired and lagged a bit, but I brushed it off as just being tired from both sports practices.

At 10am, I went to my camp counselor training course. Although I was just sitting in a chair for the meeting, as time went on, I started feeling worse. My side and leg were tingling, shaking a bit, and my side felt like it was on fire. I stayed in my seat and tried to focus. I stuck it out, denying the fact that something was really wrong.

By noon, the course was over, but I could not remember anything they had said. I knew I needed to get out of there and get home. I stood up from my chair, and my flip flop fell off. I kept trying to curl my toes around it – why wouldn’t it stay on? That was the moment I knew that something bad was happening. My two friends practically carried me out of the building to the car, but they had no idea why. How could I explain to them why, when I did not even understand myself? I didn’t say a word. We just made a joke of it, laughed at how silly it was… I just needed to get home.

Now I was home. I could not stand, and I could not explain why. I was hunched over crying in pain and fear. My mom and brother rushed me to a local hospital thinking my appendix ruptured. After an ultrasound, x-rays, and blood work, they said my appendix was fine, my ovaries were fine, I should be fine. At some point my mother started saying “we need to move her, something is wrong, my daughter says she feels pins and needles, she’s shaking, and you can’t figure out why.” Something was wrong, but they didn’t know what and were not equipped to figure it out. Finally convinced, they allowed me to move to Boston Children’s Hospital.

At 5pm, the ambulance finally arrived to bring me to Boston. What should have been a 30-minute ride turned into more than 2 hours…and I suppose we had the Red Sox game and Boston traffic to thank for that. My mom rode up front in the passenger seat. I don’t remember much about the ride, but there was a point where I started shaking uncontrollably. My mom recalls the driver turning to her and saying “don’t say anything and don’t panic, just casually turn around to look at your daughter. Has this been happening all day?” She said, “Oh no, this is new.”

By midnight, from a small room in the Emergency Department, they had completed an MRI, CAT scan, spinal tap, and more blood work. Apparently, the technician reviewing my MRI saw a spot on my spinal cord but thought nothing of it, but the neurologist on-call saw the same spot and thought that was the answer. Right then she knew. She came into our temporary room and told us it was a rare disorder called Transverse Myelitis. It was all gibberish to us; by then I was on medication and my mom was exhausted but trying desperately to understand. Finally, the neurologist drew a stick figure person with a spinal cord showing the lesions and what nerves they were affecting with arrows to those parts of the body. We still have that picture, taped inside of what is now my Mom’s ever-growing folder entitled: “Erica’s Medical Adventure.”

That was an understatement! I was immediately admitted, and the next morning the neuroimmunologist and posse of doctors tailing behind him came in to tell us the initial tests concurred this was Transverse Myelitis, but we would not know for days whether I had other infectious diseases or how I was immunocompromised. Regardless, we needed to start a course of treatment to stop the attack. My room was now in quarantine, I was hooked up to various machines, and I couldn’t move or feel from my chest down to my toes on my right side, yet the only thing I could think about was whether I would be home for my lacrosse tournament that weekend… That’s just how teenage tunnel vision works, I guess. The next eight days I would undergo IV steroid and IVIG treatments. These worked to stop the lesions from spreading, but it was too late. The trauma to my spinal cord had already been done; it would be there forever.

Forever? What about lacrosse? Summer vacation? School? Friends? Next year? Each time I asked if my sensation and movement would come back, they told me that they hoped so but couldn’t guarantee. There wasn’t enough historical evidence or research, everyone’s body reacted and recovered differently.

When I was finally cleared to leave the hospital, I didn’t go home but rather transferred to Spaulding Rehab Center. Here I spent two hours a day on physical and occupational therapy. I had to relearn how to sit up, stand up, lay down, walk on stairs, go to the bathroom, shower, and pretty much anything else you learned for the first time – I was like a toddler.

I’m a teenager. I’m an athlete. I wasn’t meant to be lying in bed or moving in a wheelchair. Those next few weeks I worked hard towards the use of a walker. I spent my free time at Spaulding hobbling about, doing one half of a lap at a time, rest, one half lap, rest. Then one lap, etc., up and down the hallway. By dinner time each night, I was back in the wheelchair, too tired to move. It went on like that day after day. When it was finally time to transfer home, I was starting to walk with forearm crutches….it wasn’t pretty, but it was better than the wheelchair.

The next few months at home were rough, re-learning movements, trying to do things without help, having equipment in the shower, going up and down stairs on my butt because my leg just would not move, feeling bloated from the steroids, trying to manage the pain and routine of all the medicines…it went on and on. My friends were out having summer fun, I was home crying, wondering how I was even going to get through from one hour to the next. That September, my mom noticed that I was getting worse. She immediately contacted the neurologist, worrying that I was having a flare up. Turns out, I was. I was not in the head space to have realized it myself, I was just living day to day. My lesions became active again from weaning off the oral steroids too fast. Back into the hospital I went, 3 more days of IV steroids and starting the regime of treatments all over again. I thank my mom for noticing something was wrong, but I just didn’t know how much more I could take.

Going to school was so hard, struggling down the hallways with this awkward metal crutch and a severe drop foot, backpack loaded for the day. The stares I got and the pity I felt was unbearable. If someone dared to ask how I was, I just put on a smile and said, “I’m good.” Did they really want me to tell the truth? To hear what my day was really like? The days turned to weeks, but time seemed to pass so slowly. I’d have a good day, then a bad day. Each time I’d tell myself, “I just need to get through the day.”

In December, there was hope. By chance, a family friend saw a Chronicle episode on TV of a woman who had TM. In her case, it had gone undiagnosed for years earlier in her childhood. After years of struggles, searches, and breakthroughs, her family saw a need and opened Project Walk Boston, a spinal cord injury rehab center specifically focused for patients with TM, MS, TBI, AFM, etc. Why had no one told us about this place? Given us this option? I guess it doesn’t really matter how we found them, just that we did, and they have now become a big part of my recovery and my life.

Week after week I make the drive to Project Walk, working on many different ways to stimulate my body and determine what works best for me. Sometimes it is electrical stimulation to wake muscles that have not moved, sometimes I strap into a harness to keep me upright so I can “walk.” The goal is to teach my body to compensate by using other muscles and body parts, to retrain my brain to move and walk. Slowly it is working…and then some days nothing works at all. I guess this is my new normal.

The neurologist said they caught it quick…apparently 24 hours is quick in terms of diagnosing a rare disease. I often think about how I would be doing now if I did not have a quick diagnosis. If I had not had the sharp pain in my side, would I have just brushed it off as tired legs or sore muscles from sports and let it go for days longer before seeing a doctor? For others with complications similar to mine, how long did it take for them to get diagnosed? Was it days, months, years?

These questions and lingering thoughts are what brought me to choose the topic for my high school senior capstone project: The Misdiagnosis and Late Diagnosis of Transverse Myelitis. I want to learn if my story of diagnosis and my timeline is similar to or different from others.

In my research to date, I have found there were multiple common diagnostic errors, a lack of rare disease education in medical school, and the need for a universal approach to diagnosing Transverse Myelitis. I wonder how significantly these factors impact the outcome of a patient’s diagnosis, outcome, and quality of life.

One final part of my research involves anyone who has been a patient diagnosed with this disease or who is a family member or caregiver of a person with TM. I have created a questionnaire that will give me insight to what the patient’s side of the diagnostic process looked like. It is completely anonymous, and I would greatly appreciate your participation. My project may not immediately put an end to the misdiagnosis and late diagnosis of Transverse Myelitis, but my hope is to satisfy my curiosity, share my findings with others, and possibly revisit this topic as I head off to college and later in life in my career in the medical field.

You can complete the questionnaire here.


Strong Inside of a Vulnerable Body

By Maria Cerio

Written for Rare Disease Day 2021

In 2021, I ski, I bike, I trip, I fall, I laugh, I cry, I walk, I roll. I have good days and less than good days. I hug and hold tightly. I am full. I focus on my steadfast, unmatched support team for whom I am infinitely grateful, whose lives are also impacted. Today, with every fiber of my being, I can say it is a happy Rare Disease Day.

In 2020, my employer treated me differently on the basis of my disability.

In 2019, I ran a road race and for the first time, a boy thought I was beautiful in my wheelchair.

In 2018, children imitated my gait as a game and college boys and police officers mistook my walking for a drunken stumble.

This same year, I united with my first wheelchair since I was three years old. It would be my ticket to freedom — allowing me to fully participate in life.

I would also find fullness in a community of disability and rare disease warriors, but still struggle to find my inner peace.

In 2017, I sank into a deep depression, losing twenty pounds and the desire to keep fighting.

I did not shed a single tear. Not one for death, goodbyes, or sad movies. I was numb — overwhelmed by feelings and lack thereof.

In Fall 2016, I started college 458 miles away from home, and new faces asked me what was wrong with my legs before asking my name.

For the record, it is not just my legs. It is my brain, my spinal cord, my bladder, my immune system, my whole body from head to toe.

I was told to “act natural.” But no part of existing in this world and in this disabled body comes naturally for me.

In Spring 2016, I walked to receive my high school diploma, putting my disabled body on display for the entire audience.

In 2015, I wrote my college admissions essay on this very topic — my transverse myelitis (TM).

In 2014, I fantasized about having my own wheelchair. I kept this dream a bubble thought, worried my peers would judge my need because I am ambulatory. It is more complicated than that though.

In Summer 2013, my doctor injected my legs with Botox (and no, not the cosmetic kind) in an attempt to relieve my tight muscles. The dose was too high, weakening me to the point where my legs felt like spaghetti. I kept falling during my family vacation in Italy.

Earlier in 2013, my body moved like the tin man. Stiff, rusty, the exact opposite of a well-oiled machine. This is still the case.

In 2012, I left Spanish class early twice a week to attend my doctor’s appointments in Boston. My teacher did not appreciate it.

In 2011, I convinced my parents that it was a good idea to let me wear four-inch wedges to my eighth-grade dance.

I also convinced my parents to let me walk the town’s 4th of July Road Race. When I crossed the finish line with my older sister and her best friend, the timer was being dismantled.

In 2010, I amazed myself when I wrapped Christmas presents and pulled my hair back with the fine motor skills I was never meant to regain.

In 2009, I presented to my class on transverse myelitis, bringing in my mobility devices and passing them around.

In 2008, I internalized my family’s stories of how I became sick and disabled. I had been told the sequence of events so many times that they felt like my own memories.

In 2007, a boy told me his grandmother could run faster than me. I still laugh about this one and only now and then I cry.

This same year, I was put under anesthesia in order to receive roughly twenty injections. Today, I do it wide awake.

In 2006, I was really into neon and leopard. I had an unreal knee sock collection and picked out my favorite leg brace pattern to date, Hot Babes. I thought it was the most scandalous name ever. My friends told our gym teacher and I blushed.

In 2005, I met someone who shared the same diagnosis as me for the first time.

I attended a symposium on my disease with my mom. She accidentally punctured my skin with the safety pin of my nametag. So my mom pricked herself in solidarity.

In 2004, I realized my years as an able-bodied individual were now outnumbered by years disabled.

I played on the little kickers soccer team and my mom wanted me to wear a helmet. Enough said on that one.

In 2003, maybe I noticed I was different. I have asked my parents when and how they sat me down to explain my disability to me. They do not have a direct answer.

In 2002, I relearned how to walk while my baby sister learned for the first time.

In Spring 2002, I was discharged from the hospital and my inpatient physical rehabilitation. I had chocolate pudding or a popsicle every night. Not because I was special, I have since learned, but so that I would swallow my terrible-tasting medicine.

My uncle visited me in the hospital, and I painted his nails hot pink. He kept it on when he tried a case in court the next day.

My sister visited and passed out at the sight of me being catheterized.

My mom and dad rotated nights sleeping next to me in the hospital, so I was never alone. Family and friends helped take care of my sisters. My baby sister tried to eat wrapping paper. Safe to say the Cerio family hands were full.

On Christmas morning 2001, my family arrived with trash bags full of presents, and we celebrated in the Boston Children’s Hospital lobby. Santa brought me a pink beanbag, and I would sit up for the first time with its support.

We had to cut the sleeve of my favorite ballerina pajamas so it could fit with my IV. For months, the Nutcracker would play on repeat on the box tv suspended from my hospital room ceiling.

My mom rushed me to the hospital in the middle of the night. On our way out the door, I supposedly declared we could not leave without putting my leopard clogs on first. My dad stayed home with my two sisters.

In 2001, well, I would forget the words for Santa and chicken fingers, two of my favorite things. The first signs that a disease was ravaging my neuroimmune system. I would become paralyzed from the neck down, hospitalized in the neurological ICU, and my life as I knew it and my family’s life as they knew it, would be changed forever.

In 2000, my mom would video me with her camcorder to show doctors. She felt there was something off; whether or not this is connected to the onset of my TM is still unknown today. She pleaded for doctors to take her seriously. This would not happen until a year later when we moved to Boston and she carried her motionless child into the emergency room.

In 1999, I took my first steps. Earlier than average. In hindsight, I believe I learned so early because the world knew the ability to do so would soon be taken from me.

In 1998, I was born healthy in Philadelphia, PA.


Rick Telander Added to The National Sports Media Association’s Hall of Fame

Rick Telander’s symptoms started on October 24th, 2009, and he was diagnosed with transverse myelitis. Shortly after his attack, his wife, Judy, contacted Sandy Siegel, and Rick and Judy became members of The Transverse Myelitis Association (now the Siegel Rare Neuroimmune Association).

Rick previously worked at Sports Illustrated but has spent the last 26 years as a senior sports columnist for the Chicago Sun-Times. He was recently added to The National Sports Media Association’s Hall of Fame.

You can read the article in the Chicago Sun-Times here.

On Your Feet: HAC Member Joyce Heritage Walks Independently For The First Time In Over 21 Years

This article was originally published by the Hockessin Athletic Club/Enhance Magazine, produced and published by Sasha Reddy, Graphic Designer, Hockessin Athletic Club, and is republished with permission.

It’s late on a foggy Wednesday morning. Personal training clients are performing banded walks back and forth across the studio, wrestling under heavy weights, leaping away from the floor with explosive energy, all under the watchful eyes of their trainers. Off to the edge of the room, one woman is treading quietly around the studio’s perimeter, skirting the busybodies in the center at a gradual pace. Keeping her eyes trained on her feet and the floor in front of her, Joyce Heritage devotes her full attention to every measured step she takes. Her trainer, Keith Glines, maintains a tight grip on the belt looped around Joyce’s midsection, positioned to brace and catch his client at the slightest sign of a fall. Though seemingly mundane, Joyce and Keith’s slow schlep around the room is nothing short of extraordinary. These are among the first unassisted steps that Joyce has taken in over two decades.

Joyce’s story begins during Father’s Day weekend, 1999. She and her husband John had just left a barbecue at their daughter’s house when, during the ride home, Joyce began feeling some discomfort in her legs. “I told John that I was feeling some cramps in the calves and my toes were tingling,” she says. Though the discomfort didn’t seem to be cause for alarm, by the next morning, Joyce was paralyzed from the waist down.

Joyce was quickly transported to the emergency room, where rigorous diagnostic testing began. Over the next several days, she would endure not one but two spinal tap procedures, a plasmapheresis exchange – a process by which the blood is removed and machine-cleansed – and countless other procedures. Early in the process, doctors were concerned that the paralysis would continue to spread and cautioned that she might have to be “trached and vented.” Amidst all the uncertainty and clamber as medical staff scrambled to try and solve the mystery of her sudden paralysis, Joyce remained level-headed and calm. “There was no time for emotions,” she says. But finally, answers did come.

Several days after her arrival, Joyce was diagnosed with Transverse Myelitis (TM), an inflammation of the myelin sheath of nerves around the spinal cord. In Joyce’s case, inflammation around her T12 vertebrae had caused her to become paralyzed from the waist down and her nerves to burn as if they were on fire. Though the damage to Joyce’s spine was permanent, doctors explained that she might eventually be able to walk again. “With TM, one-third get everything back, one-third get something back, and one-third get nothing back,” she remembers being told. Though TM had left her requiring the use of a wheelchair, with many months or even years of physical therapy, she could eventually be up on her feet once again, and that prospect made Joyce’s next goal crystal clear.

Just as soon as Joyce received her new wheelchair, she became determined to get out of it. After a month of “hardcore rehab,” she was able to walk 17 steps with the aid of a walker but still largely required the use of a wheelchair. A few years into physical therapy, per her doctor’s recommendation, Joyce became a member at Pike Creek Fitness to work on her mobility in the pool and get further guidance from a personal trainer. “Then I met Keith Glines, who has really almost become my adopted son at this point,” she gushes.

When they began working together around 2004, Keith had not been a trainer for long. “I was almost a little intimidated,” he admits. Transverse Myelitis is a rare diagnosis; even though Keith had several years of experience working with clients with various medical conditions, he wasn’t totally certain of the best way to conduct Joyce’s training. He started by building on some of the drills that Joyce was already doing in physical therapy, then slowly began incorporating new exercises. After Keith earned his Muscle Activation Techniques (MAT)® certification in 2008, he began to employ those skills in his sessions with Joyce, which really helped with her nerve pain. “It was mostly just analysis and experimentation,” Keith says. As far as Joyce is concerned, his help was invaluable.

Though Joyce was able to move around with the aid of a walker, she could not yet walk full-time. The lack of sensation in her legs caused her to develop drop foot in both of her feet. She’s broken each of her ankles at least once just by tripping over her toes – so she still used a wheelchair most of the time. Determined to overcome her drop foot, Joyce began to observe the way that people walk. She paid close attention to the lift and push of the heel at the beginning of each step and the cadence of the different parts of the foot striking the ground in hopes of re-learning the mechanics herself. Unfortunately, she was just physically unable to create that motion. Finally, in 2011, Joyce underwent surgery on both feet at Mercy Hospital in Baltimore to correct her drop foot. She was then fitted with medial lateral athletic supports and orthotics. The equipment allowed her to lift each foot fully and step down without dragging her toes, thus letting her finally trade in her wheelchair for a walker.

Joyce had overcome the physical hurdle that prevented her from walking, but her fear of falling still lingered. She and Keith began spending time during their sessions just walking around the personal training studio to help build back her confidence and motor skills. Joyce started by completing laps with her walker, and over time she progressed to using a rolling cane (while keeping a “death grip” on Keith’s shoulder). “Keith has been challenging me ongoingly with things that he thought I could do if I got rid of the fear of falling,” Joyce says with gratitude.

Since her initial TM diagnosis in 1999, Joyce has experienced constant searing pain from her waist down to her toes. She’d taken various medications over the years to help manage her pain but at a cost. In addition to numbing the pain, the meds dulled the already limited sensation in Joyce’s spine and legs, adding to her challenge with walking. In preparation for a procedure, Joyce replaced her normal “heavy-hitter” pain meds with CBD in October 2020. Suddenly, the sensation in her lower limbs began to return. Though not fully recovered, her awareness of the ground beneath her became clearer. “I said to John, ‘I feel more sensation through my feet and my legs.’ And then I realized, ‘Well, wait, let me see what I can do with that new signal that I’m feeling.”

After several weeks of practicing in secret at home, Joyce was ready to try walking in the personal training studio with Keith. On November 18th, 2020, with Keith hovering closely to catch her if needed, she walked around the studio all by herself. Though each step felt wide and awkward, she’d done it. Joyce and Keith snagged another personal trainer and snapped a photo together to celebrate.

During their next few sessions, Keith and Joyce continued to push her ability to walk. After that first unassisted lap, she decided that she’d first try to correct her gait by shrinking the gap between her legs. After achieving that goal, Joyce decided she would walk a lap while looking ahead rather than down at her feet. “I was totally silent like a church mouse when I would walk,” Joyce says, “‘cause I was so focused on what my feet needed to do, what my eyes needed to do…” To further push his client’s potential, Keith then challenged her to count while she was walking to try and shift her focus away from the floor in front of her. After that, they tried carrying out a conversation while doing their laps and obstacles for Joyce to walk around. Even though she had finally walked on her own for the first time in over two decades, she was still eager to keep improving.

“The cool thing about Joyce is that she’s up for anything,” Keith says. He could tell her that she was going to be strapped up and hung from the rafters, and she’d be completely open to trying it. Even during quarantine, while the world had all but stopped turning, Joyce was texting Keith regularly to let him know what exercises she’d been performing at home and ask what else he wanted her to do. “How many people took that time off and got thrown off track?” Keith says. “Not Joyce! She wasn’t letting that happen. She’s a fighter that keeps pushing herself to achieve more and more!”

The way Joyce sees it, it’s Keith who deserves the credit for her success. Though safety is always his first priority, Keith has never been one to tell her whether she is or is not ready to try a new stunt. Rather, he trusts Joyce’s gut as much as she does, and he’s always looking for ways to challenge her to improve physically. That’s what she loves about training with him.

There’s a “mind-over-matter” element to Joyce’s journey. Though she realizes that not everyone has the fortune to be able to walk again after becoming paraplegic, from personal experience and her discussions with various doctors, she’s learned that healing is, at least in part, a mental game. According to Joyce’s MRI’s, as one doctor described, there is no reason that she should be physically able to walk today. Conversely, some patients continue to require the use of a wheelchair even when their bodies appear to be able to move on their own. During the last 21 years since becoming paralyzed, Joyce never thought that she would walk independently again, but that never stopped her from picking goals and working to achieve them. “You have to keep pushing yourself,” she says. “As you step through life’s journey, believe in yourself.”

The Vaccine Gave Me Control of My Life Again

By Sandy Hanebrink, OTR/L, CLP, FAOTA
Diagnosed with TM since 1987
Executive Director, Touch the Future Inc.

Many individuals out there are struggling with the thought of getting or not getting the COVID-19 vaccine. Others are panicking because they are not in the cohort allowed to get the vaccine. There is much distrust on what is fact and what is not. In the disability community this is amplified, but not as much as it is in our rare neuroimmune community, where much conflicting information on vaccines in general abounds. I am right there with you. There just is not that much data out there for our community on anything and especially on the COVID-19 vaccines. So, what made me decide to finally schedule getting the vaccine?

First, Dr. Greenberg put out a few SRNA videos with important and science-based information that expanded as we learned more about this virus. I was already thinking no way am I getting this shot and no way would my doctors even let me. You see, I don’t just have transverse myelitis, but a very complex medical history including allergic reactions to other vaccines, medications, and other things. So, I was pretty much in the not ever going to happen camp. But as information became more available and Dr. Greenberg validated this information, the medical professional and advocate in me just had to know more. Then the shift to maybe I should get this came back into play. I began talking to my primary care doctors again and seeing if they had changed their minds too. With new data, we all began to shift our opinions.

I began researching the studies that Pfizer and Moderna were doing in the US and UK. I reached out to friends at CDC to verify interpretations. I sent information to my physicians for feedback. I looked at the science and weighed the risks. Because of my allergies, I reached out myself and got my pharmacist to reach out to Pfizer and Moderna for a complete list of ingredients, and then we cross referenced these ingredients with other medications I had reacted to to see if anything was there to cause concern. Nothing popped up. I then reviewed the little data known in Dr. Michael Levy’s Rare Neuroimmune Disorder and COVID Vaccine Tracking Survey and saw there really is no difference on how individuals from our community are responding than anyone else. There were zero neurological changes or exacerbations. After talking with my primary doctors, I met with my neurologist to talk about her recommendations and timing the vaccines with my Rituximab infusions. The timing was perfect as I was a little over a month out from my next infusion and as an occupational therapist, I could schedule under the 1A tier and not have to wait for 1C to be authorized to get the vaccine. I scheduled my first vaccine and adjusted my Rituximab infusion to be 3-4 weeks past the second vaccine dose to allow the vaccine antibodies to develop. Thankfully, this was only one week later than I was already scheduled.

We had a plan in place that my medical team and, more importantly, that I was comfortable with executing. I got my first Pfizer shot. I did take a Benadryl per my doctors’ recommendations 30 minutes prior to my appointment just in case for allergies. I had no immediate reaction. The next day I had some soreness at the injection site and, the next evening, I had a mild temperature for about an hour that Tylenol resolved. I did not feel bad, and I had no neurological changes. And to make sure everyone else in our community has the data to make the decision for themselves, I completed Dr. Levy’s tracking survey. I just had my second dose on Feb 1st. Like the first dose, I had soreness the next day but this time it was a bit red. I definitely felt fatigue and some dizziness but was fine the next day. The only noticeable symptoms were the injection site inflammation and soreness. If anything changes, I will share with the community and do the tracking to ensure data is available. I am also scheduled for an antibodies test to see how my system responds in about a month.

I am not suggesting everyone go to the extreme I did before you choose whether to get the vaccine. I think what is important is that you are comfortable with your decision, and that you and your doctors make the decision together. I also think it is a great idea to listen to the SRNA videos and podcasts to get the science and facts as they relate to the vaccine and our community.

For me, I have pretty much been home since March 2020. I have changed to working virtually. I only go out for medical appointments that must be in person. The world as I knew it stopped. During the summer and early fall, I went at off times, 3 times, to an outside dining restaurant, but nothing since. There are just too many people not wearing masks, getting sick and dying to even consider it. I went for a car ride to see fall foliage and we watched college football outside, 8 feet apart with patio heaters and a fire pit blazing, with masks on with only two other people who we knew were being extra cautious. My bubble has been my Mom and my roommate, Dorothy. Dorothy has done all our running around for things not delivered. She is a physical therapist, and she changes in the garage, does laundry and showers before being around us. A life of extra cautious quarantine. Deciding to get the vaccine gave me back control. It put a plan in place that gave me hope for some normalcy again. It gave me the possibility that if I got COVID-19, I had a shot at surviving it. It offered the chance to get back out and do good for others again. I could be more than a voice on the phone or face on Zoom. I could work with clients and pound on doors advocating for accessibility and healthcare again, masked face to masked face. It gave me the feeling I was once again in control of my life. I knew based on science, that the risk of adverse reactions was so much less than if I got the virus. I knew that any reaction I might have could be treated, and that my doctors and Dr. Greenberg all felt the vaccine was safe.

So, this is my story. I got my first shot, and I am fine. I got my second shot few days ago, and I am fine, and I believe I will continue to be fine. I hope it helps you decide what is right for you. I hope you get the vaccine and get control of your lives again. I will keep you posted on my vaccine journey. Be well and be safe. We are in this together.