As journalist Sierra Upton notes in a recent YouTube report: “Imagine if you had to wear a hat, a sweatshirt, pants and sunscreen just to walk down the block. Now imagine that you could only be outside for 10 minutes at a time”.
Upton describes the day-to-day life of Kansas University senior, Thomas “TJ” Henderson.
Henderson is living the life of someone with the rare, life-changing, skin and muscular disease known as Dermatomyositis. The disease affects some 2,000 people nationally.
Henderson is scheduled to graduate in December at KU.
Henderson describes his situation on his GoFundMe page where he is seeking financial help for medical and education bills:
I transferred here (KU) 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.
The National Institute of Neurological Disorders and Stroke with the NIH describes Dermatomyositis as one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness. Dermatomyositis’ cardinal symptom is a skin rash that precedes, accompanies, or follows progressive muscle weakness. The rash looks patchy, with purple or red discolorations, and characteristically develops on the eyelids and on muscles used to extend or straighten joints, including knuckles, elbows, knees, and toes. Red rashes may also occur on the face, neck, shoulders, upper chest, back, and other locations, and there may be swelling in the affected areas. The rash sometimes occurs without obvious muscle involvement.
There is no cure for dermatomyositis, but the symptoms can be treated. Options include medication, physical therapy, exercise, heat therapy (including microwave and ultrasound), orthotics and assistive devices, and rest. The standard treatment for dermatomyositis is a corticosteroid drug, given either in pill form or intravenously. Immunosuppressant drugs, such as azathioprine and methotrexate, may reduce inflammation in people who do not respond well to prednisone. Periodic treatment using intravenous immunoglobulin can also improve recovery.
TJ writes:
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.
To read more about TJs situation and to help–visit his GoFundMe page
I also have dermatomyositis. All is not lost.. I had skin breakouts from my ankles to my neck, my face, chest and full back. Arms too. Then I began to lose my muscle strength. I ended up in the hospital for five months while the first two months were screening for cancers and eliminating other diseases. Finally with a MRI and muscle biopsy I was diagnosed. I was on Prednisone 60 mg and now am down to 10 mg. I took azathioprine for 4 months, Plaquinel for skin for a year, and mycophenolate for five months. I lost my swallowing muscles and was bedridden 95% immobile but little by little with the boost of the IVIG infusions I slowly was able to move again. With daily PT and therapy for swallowing I was able to walk and eat again. It is now two years and though I am slow I can do most things. I use a walker, a can and to run errands either my electric scooter or my car. Now I am only on the Prednisone but just discovered I have cancer, so keep an eye on things and get all the tests they can give you!
Keep the faith Thomas! You may just be able to walk down that aisle, and if not, maybe scoot down it??
TJ, I hate that you’re going through this. It really stinks to have to bundle up in 90 degree heat. My diagnosis was 5 years ago & it makes me think twice about everything. Take care of yourself and never give up. Life will be challenging but it will also be wonderful. You can do this.
TJ, I have dermatomyositis for 5 years now and my spouse has Poly (Weird, I know but we actually met at a support group meeting) If you are not involved in one find one and have your finance go with you. She will need to understand how other care givers deal and what you might go through because we live in a world of unexpected. I have been blessed to have a mild case but I am scared daily that the tables could and may turn. I have 2 children so I am most concerned how they will deal with my illness. I keep them informed. Eat healthy and exercise, and try to maintain your stress. God bless!
Hey everyone. Thanks so much for the kind words. I showed them to my fiance, they help her as much as me.
Stay strong every body..day to day right? 🙂