Transverse Myelitis (TM) is REAL – and it HURTS
- Hlumela Tshijila
- 4 hours ago
- 2 min read
My symptoms began on 13 March 2022.I received my diagnosis on 23 March 2022, so it took ten days in total. The main reason for the delay was a long weekend, which made it difficult to get an appointment with a neurologist.
I was hospitalized for three days and treated with intravenous steroids. During that time, I could not walk without a walker, and it took seven months before I was able to drive again.
Today, I can walk normally, although my feet begin to burn if I walk too much. My remaining symptoms include constant burning in my legs and feet, occasional fatigue, and extreme sensitivity to anything cold touching my skin below my belly button. Because of this, winter is difficult for me.
What “equity” means in my story
Access to medical care is not a problem for me. I have an excellent medical aid. However, my medical aid does not consider my spinal injury a chronic condition, even though my neurologist has provided motivation for it to be treated as one.
My family has been incredibly supportive, but there is a significant lack of knowledge about Transverse Myelitis, even among medical professionals.
Day to day life
I cannot complain about my daily life. My wife is extremely understanding and supportive. Medication helps make my symptoms more manageable.
Unless a cure is discovered that can repair the myelin sheath around the nerves, my symptoms will remain the same. I have learned to accept that this is my life now.
Hope and strength
Routine helps me cope. I also participate in a Facebook group for people with Transverse Myelitis, and reading other people’s stories brings me comfort and connection.
I am fortunate to be able to afford medical aid, and I do not take that for granted.
What I want others to understand about rare diseases
There needs to be far more awareness about early symptoms so treatment can be given quickly. In my case, I believe that an immediate dose of steroids could have prevented additional damage.
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