Hello everyone, my name is Thomas Henderson…or TJ for short.

I am currently suffering from a rare, life-changing disease known as Dermatomyositis.

This disease affects less than 20,000 people, and truly not a lot is known about it.

An Overview of Dermatomyositis

My full story is a little bit difficult to explain in a soundbyte. I appreciate you taking the time to read it. Here goes.

I am currently a senior college student studying in Kansas. My major is History with a minor in Classical Antiquity. My long-term plan was and still is to attend graduate school here, pursuing a Masters degree and eventually a PhD in my field.

I transferred here for my final two years of college in Summer 2012. In that year I was able to make the honor roll and worked for the University Admissions department giving tours and answering questions for prospective students. It was during one of these tours in July, 2013 that I noticed something was going wrong with my body.

It began as a pronounced sense of weakness, followed by a rash that seemed to spread indiscriminately, from my back to my legs and even my face. One thing that seemed certain was that the sun and activity made all of the symptoms worse. Still I did not think much of it and simply told my job I would be back within a week after I checked with a doctor.
I do not have pictures of what the skin looks like during an active flare, but it is probably not something you would want to see anyways. After it has settled and ‘run its course’ on a particular area of my body, there is scarring.

Fast forwarding to August, 2013 and thanks to truly heroic efforts from my primary physician, we finally had a suspected diagnosis. Unfortunately, this suspicion landed me in the hospital for a week to conduct tests and attempt to bring under control an enzyme in my bloodstream known as CK. This enzyme typically ranges from 52 to 336 units per L in males, as you can read here.

A description of CK Levels

The reason for an immediate need in care was that my CK had risen to 24,000..a potentially dangerous amount.

Before the month was over I found myself poring over literature to learn about a muscle and skin disease called Dermatomyositis. I learned that it was a rare autoimmune disease for which there is no cure. I also learned that treatment tended to be expensive and prolonged for those diagnosed because there are not yet medicines available specifically designed to treat this illness. However, I had a good team of specialists on my side and the start of treatment was swift. My main concern was being able to start the Fall semester on time, which I was able to, earning Honor Roll again.

Over the course of Fall 2013 my body steadily gave rise to weakness and pain that I had never felt before. I am a true believer that these things can be dealt with in stride depending on the spirit one carries, so I missed almost no class in a determined effort to finally complete my undergraduate degree.

While early treatments were able to decrease the CK in
my bloodstream and the skin damage was slowed to an extent, I was able to still work part time and even visit my hometown for Christmas (not knowing it would be my last true trip for quite some time).

Some time around late December and early January, the disease seemed to take a different direction. The pain and weakness were still as bad as ever, and to make matters worse, my skin had started to become damaged again. What really changed my life in this time period though was a new symptom that affected my breathing. I have been a lifelong asthmatic but this was truly something different. The best way I could describe it to doctors was like trying to ‘breathe through a straw that is filled with fog’. This feeling of breathlessness caused an extreme change in my lifestyle.

For the first time I was unable to go to class consistently because I simply could not walk very far. Emergency room visits became common, sometimes happening four or five times a week. Of course, with the feeling of not being able to breathe came a heightened sense of anxiety and fear. I started to feel unsafe nearly anywhere and essentially resigned myself to the fact that eventually I might not be somewhere where I can get help. We tried everything from the very practical to the longshots…anything to help me breathe better given the body I was working with and the elements.

While the ER doctors and my regular specialists acknowledged that the symptoms were real, we were all at a real loss on what exactly to do about it. We now know that this manifestation is most likely as simple as the chest muscles becoming weak, like the rest of my body. As those muscles lose strength, the act of breathing in and out, which of course I cannot rest from, becomes a great labor. Some more information on this can be found here…

Studies on lung disease in DM patients

As I noted before, I was still able to function, albeit in a limited sense, before the inclusion of the breathing issues. After January 2014, my life production took a dramatic hit. In March 2014 I was forced to withdraw from the Spring semester. From April until September my world became a carousel of appointments, new treatments, starting and stopping physical therapy due to lab results and pain, emergency room visits, ambulance calls and being bedridden at home.

It was around this time that I had to add another specialist to my team to monitor *another* symptom that had started to manifest known as SVT, a sudden and rapid increase in heart rate for prolonged periods of time. These episodes sometimes saw my heartrate exceed 185 beats per minute.

SVT Definition

This was diagnosed after wearing a home monitor for nearly a month.

I have to admit that during this period, for the first time, my spirits took a really hard hit. Unable to travel due to loss of proximity with doctors and fear of being on the highway during a severe breathing episode, my town became my bubble. No longer able to go to sporting events with my father or to the movies with my fiance, I was blessed to have had great family and friends who would frequently surprise me for my birthday or a spare weekend, even if that spare weekend only meant movies on the couch. I know their hearts hurt, especially my mother who lives two states away. It means the world what they try to do for me. Keeping my spirit high is as much for them as it is for me.

In September 2014, due to an upcoming change of campus housing and the desire to be on more level ground for my disease (for walking and breathing purposes) I moved to a new home rental. Over the summer I had been able to finish two more courses online in the hopes of finally being able to complete school in the Fall of 2014. This move was meant to help me stabilize and be able to do that.

Unfortunately, most of the classes I needed were not offered online, and so I had to enroll for some on campus as well. With the help of the University’s disability department I made another spirited attempt. The symptoms, which we were still struggling to control, got the best of me again. I managed to finish half of my classes that semester, withdrawing from the other two.

With this most recent Christmas break, I met again with my specialists and devised yet another treatment plan. As I stated  before, because there is no set treatment for this disorder we are instead forced to try many different combinations of medicines that may work in one person, but not necessarily the next. Throughout the Fall for instance I had been receiving a type of plasma infusion known as IVIG five days a month for five to seven hours a day. This particular treatment helped to stopgap the process of the disease, but ultimately the effects would wear off around the three-week mark. The cost per round of treatment on this was between $40,000 and $50,000.

In a continuing effort to reverse the effects of the debilitating breathing problems, I underwent a sleep study to see if a CPAP machine might be able to give my chest muscles the rest they need at night. I have since worn this machine and am able to sleep throughout the night better than I have in over a year. As far as the breathing goes, it is still a work in progress. I am told that even if it does help the process to feel it will be a slow one, but I am extremely hopeful.

Even though I felt that I needed more time for recovery, I again attempted to enroll for the Spring 2015 semester. I have been a college student off and on since 2004 (due to work and other responsibilities) and getting to my graduation day is something I want my family to be able to see…to know their support was not wasted. I will get there. Without the previously mentioned setbacks, my graduation would have taken place in the Fall of 2014. However, the earliest possible now is Fall of 2015.

As has become a recurring story in the last year, this semester has not gone well due to limited mobility. At the suggestion of my physicians I had to once again withdraw, save for a single class where the Professor has incredibly offered to meet with me on a more infrequent basis and in a location I can more easily get to.

My days now consist of doing research, if I am physically and mentally able, for my class. Once a week I attempt to go for a drive just to be out, but this is frowned upon typically since I am not supposed to be in the sun for more than fifteen minutes at a time. This is because, as we suspected in Summer 2013, the sun tends to accelerate the damage to my skin and overall activity of the disease. Last week I was instructed to start taking a lap or two around my house, another attempt to jumpstart physical therapy (which is always finicky since the physical activity itself can cause a flare to worsen).

My medication causes severe immunosuppession, so avoiding common ailments, and the places I might contract them, is also a concern I’ve learned to live with.

I do find my spirits still somewhat down, but know that I am blessed that I am able to sit here and even type this. My breaths are not at peak capacity but they are there.
My worries now consist mainly of fear. As crazy as it seems, I am afraid of snow because I will not be able to drive to the hospital for aid.  I am afraid that if something happens to my family I will not be able to be there, since I cannot travel out of town. I am afraid for my beautiful fiance and the life she is signing up for, one where taking her on a decent date is not without great planning and struggle. I fear for my own wedding day and being able to get through it. I fear for where my life will be soon, and not because of my desire to live it but the hand I’ve been dealt.

Well, there you have it. This is my story in a (giant-sized) nutshell. I am just a regular guy who has a life plan. That plan has not been derailed, there is just some debris on the tracks.
Ultimately I know I will finish my degree and my doctorate. I will marry the woman of my dreams and begin my career. I will become an advocate for others who need the help to push through something like this.

From the absolute bottom of my heart, thank you.