Off Topic: My Dermatomyositis Journey- the Rare Disease I Got After Covid Vaccination.

Dermatomyositis is a rare inflammatory condition that can be fatal, especially in the first year after diagnosis

Lashaun Turner May 23, 2024

Some of you subscribed to my newsletter before I began this ordeal 3 years ago and I remember writing about it and letting everyone know because I had to take an absence from everything including this newsletter to deal with my health. Since that time, I’ve committed to participating in raising awareness for this rare disease in May, which is Myositis Awareness Month.

Dermatomyositis Symptoms and Diagnosis

Dermatomyositis (DM) is a rare, chronic, inflammatory disease that affects the skin and muscles. It's caused by an autoimmune process where the body's immune system attacks its own muscles and small blood vessels that supply skin and muscles.

DM can be fatal, especially in the first year after diagnosis (Ricky Bell, the former No. 1 NFL Pick died at age 29 due to complications from Dermatomyositis.) However, about 20% of people with Dermatomyositis go into long-term remission.

My DM symptoms started shortly after Covid Vaccination. I had a Heliotrope Rash for 4 months, fevers, fatigue, pain, shortness of breath, and I had a fall. After 14 doctor visits, ER’s Urgent Care etc. I was finally diagnosed with DM when the muscles in my upper body became weak. At the worst of it- I was unable to control my torso to sit up and could not take care of myself. DM also caused Interstitial Lung Disease (ILD) which caused me breathing difficulty.  

This video of a man with DM had similar upper body weakness like I had. His is worse. I always share this video because seeing it when I was first diagnosed gave me hope.

Dermatomyositis Treatment

In 2021 Immunoglobulin (IVIG) was approved for DM. I received infusions throughout 2022 & early 2023. Along with CellCept, Prednisone and Plaquenil. Treatment brought me out of the acute phase and thankfully brought the inflammation down from my lungs to where I could walk and talk at the same time. My maintenance meds now are CellCept & Plaquenil. I had monthly labs and doctor visits for 18 months. Now, I have labs every 3 months and doctor visits every 6 months.

Long Term Effects

After the 1^st year and until now I am left with about 80% muscle strength in my upper body. Unfortunately, my right upper leg & hip are weak and remain painful. It took about 9 months before I was able to drive. I generally have to lift my right leg out of the car, sometimes from the gas to the brake, onto the bed etc. I always joke that my right leg is pretty useless. Although, I can walk with a limp on it for short distances. I’m in bed or sitting 60% of the day.

However now I can take care of myself, cook and clean- it just takes time and a lot of breaks to rest.

Hope and Grief

So, the first year I wrote about what the disease is. The second year I wrote about treatment and research ( I gave my DNA to research). This year, what I’m experiencing is hope and grief- so I’d like to share that because I believe others with DM can relate.

When DM first happened, I was so hideous looking that I didn’t want to be seen. I feared that I would never so much as date again because of how I looked with the rash, swollen head and face. I even had a big purple spot on my chest. It was a HORRIBLE thought of being lonely for life. And I cried every day because of it.

These are the pics I feel comfortable showing- there were some that I have never shared where I was unrecognizable..

Lashaun Turner “the Black Face of Dermatomyositis” 2021

But after the first year of treatment the inflammation receded substantially, and I was left mostly with red/purple discoloration around my eyes. And, from the steroids (Prednisone) I had the typical moon face. That’s when I spent hundreds of dollars learning and experimenting with makeup application and face creams. I was able to conceal the discoloration and eventually felt confident enough to start dating again.

Now, into my 3^rd year, there are only minimal traces of discoloration. The moon face gradually subsided after I came off the Prednisone. Thankfully in the past 8 months I’ve been able to go face naked (no makeup) for the first time in front of others. My skin is practically normal again.

Although I don’t look disfigured anymore, I often times still see myself like that in my mind’s eye, that’s how traumatizing it was/is.

Life changed, forever, and I continue to cry sporadically and grieve over the persistent muscle weakness and the things I can no longer do because of it. I wish I could travel like I used to (all the time). I recently went to Las Vegas and I did manage to go to Hawaii last year, although, I had a situation where I got stuck in the ocean lol. Funny not funny:). I’m not using any devices to get around anymore, I just take my time, go as far as I can, rest and repeat.

Sadly I want to mention, last year when I wrote my piece, a gentleman from another country read it and wrote to me of his intentions to end his life because of DM. I tried to offer him support and put him in touch with our support groups. After two exchanges he stopped communicating. I understand for some this is too much to bear, and some have it way worse than myself. But the message today is - it’s not over.

To anyone with DM, as therapies for this rare disease evolve, the quality of our lives can be stabilized. We can enjoy the things that are precious in our lives, our families and our friends. Continue to be the warrior that you are and please hang in there. You will never be the old you, but you can learn to live in the new you, I have, and I will continue to.

#FuckDermatomyositis and all autoimmune disorders!

P.S- in 2021 my mom got sick, and I had to move back home. It is because of this I took the vaccine as I normally do not take shots. 2 years later, in October of 2023 I finally caught Covid- it was a mere cold. Afterwards it dawned on me, I ruined my life by taking that vaccine, all to prevent me from having a cold. From there I had to let go of anger and work through the stages of grief/loss. That’s where I’m at today.

Dermatomyositis following COVID‐19 vaccination

COVID-19 vaccine-associated dermatomyositis

Now back to Politics…