Dermatomyositis is an inflammatory disease marked by muscle weakness and skin rash.
May is Myositis awareness month. This article will explain what the disease is and I will share some of my personal journey with it.
What is Myositis?
You may not have heard of Myositis. Estimates are that there are approximately 125,000 people living with some form of Myositis in the United States. I happen to be one of them.
Myositis encompasses a group of conditions including Juvenile Myositis, Dermatomyositis and Polymyositis.
These conditions are sometimes referred to as inflammatory myopathies (inflamed muscles) and can affect internal organs, skin, and multiple muscle groups.
Myositis causes include infection, injury, autoimmune conditions, and drug side effects. -Web MD
Dermatomyositis is a rare disease and variant of Myositis that causes muscle inflammation and worsening weakness over time. It's different from the other forms of muscle disease because it also causes skin problems.
In the United States, approximately 5-10 in 1 million people are affected and the incidence appears to be increasing. (Dermatomyositis) may appear at any age but most commonly from age 40-60 in adulthood; in childhood 5-15. The female to male ratio is 2:1. Source Physiopedia
The journey to Dermatomyositis diagnosis
My own journey included a lot of misdiagnoses before getting the right one. And that’s common when dealing with this rare condition.
In September of 2021, I began to have swelling and discoloration around my eyes. The rash went from pink to reddish to purplish and eventually covered a large swath of my face.
Heliotrope rash is a hallmark of the disease but can be difficult to differentiate on darker skin. Hence, a prolonged path to diagnosis in some cases like mine.
September through December I had at least 14 encounters with doctors including allergy, rheumatology, ophthalmology, and dermatology.
I was misdiagnosed with allergies, dermatitis, sinusitis, cellulitis and given multiple courses of antibiotics and steroids. I was told to change my soaps, lotions, hair sprays, detergent, and things in my environment that could be triggering.
The Dermatologist suggested a biopsy of the rash which would eventually corroborate the diagnosis.
In December 2021, I started to notice I was becoming breathless. My energy was low, and I was having a lot of joint pains. I ended up in the Emergency room December 22nd.
A week later is when the full scope of Dermatomyositis declared itself. I woke up one day with upper body weakness in my torso. My shoulders, arms and hands were in extreme pain and weak.
The muscles in my upper arms were inflamed and I effectively lost the use of my arms for the next 7 to 10 days.
It has been 4 months since my diagnosis, and I am still recovering from the weakness. I’ve received standard therapy of Steroids, immunosuppressants, and Intravenous Gamma Globulin.
Myositis recovery and support
Dermatomyositis and polymyositis are serious diseases with a disease‐related mortality of at least 10%. In the long term, myositis has a major effect on perceived disability and quality of life, despite the regained muscle strength. Source NIH.
Those suffering from this rare condition can find support at Myositis.org. There is also a Facebook group, which I have found very helpful and would also recommend.
Many Myositis sufferers, particularly those with Dermatomyositis will not only suffer physical disability but also the disfigurement of rashes.
The psychological and physical toll of what will be the new normal for Myositis sufferers is undeniable. Having a support system is critical.
Lifestyle changes including some exercise and physical therapy as tolerated, rest, nutrition, and the reduction of stress, can help improve quality of life.
The Myositis Association
For those interested to learn more the Myositis Association will hold a virtual summit May 21, 2022, providing information, encouragement, and the latest research. The summit is open to patients, caregivers, and providers.
**This is a work of nonfiction based on actual events that I have experienced firsthand; used with permission.
Comments / 6