The following article about living with myositis appeared in the Orlando Sentinel on Friday, May 17, 2019. See the original article here.

By Miyoshi Gordon-Matthews

In 1995, I was playing basketball in the driveway with my then 9-year old son when I fell. I did not think much of it. Until the next day, when I fell again. This time I was running inside to escape the rain. I knew instinctively that something was wrong. When the blood work came back from my primary care doctor, he was sufficiently alarmed to send me to a specialist. Within a month, I was diagnosed with polymyositis – a very rare and progressive neuromuscular autoimmune disease that causes inflammation of the muscles and associated tissues.

In the ensuing years, I have experienced muscle weakness, pain, extreme fatigue, skin rashes, high blood pressure, peripheral polyneuropathy, and the worst case of shingles my doctor has ever seen. Twelve years ago, I was diagnosed with breast cancer – a condition sometimes associated with myositis.

It’s been very difficult, but I consider myself one of the blessed ones. Although there is no cure for myositis, my early diagnosis led to quick treatment. Yet, today, thousands of Americans living with myositis do not know it or are misdiagnosed with other, more common, autoimmune diseases. Awareness – even among medical professionals – is very low. Missed or delayed diagnoses can needlessly delay treatment, prolong pain, and be catastrophic in terms of disability, long-term physical damage, and even death. This month is Myositis Awareness Month, a time to join the effort to help find a cure. The estimated 75,000 Americans who suffer from this rare disease need our help.

The need is especially significant for African Americans and women of color, who are more likely to suffer from myositis. A new analysis from The Myositis Association shows that nonwhite women are twice as likely to die from the disease than others with the same diagnosis, and they are four times more likely to die than white men with the disease. In childbearing years (ages 15-34), mortality from myositis in nonwhite women is 3.5 times higher than in Caucasian women.

Myositis involves chronic inflammation of the muscles. Symptoms of weakness, swelling, and muscle damage often appear gradually. Long before patients are diagnosed, they may have trouble getting up from a chair, climbing stairs, or grasping objects with their hands. Patients may fall, find it difficult to reach their arms up, have difficulty swallowing, or other symptoms. Myositis is often accompanied by a scarring of the lungs that makes it difficult to breathe. The disease can take several forms, including dermatomyositis, which, despite its characteristic rash, red or purple blotchiness over the shoulders and chest or around the eyes, can be harder to identify in people of color.

Early diagnosis and swift treatment result in better patient outcomes. Public education is imperative to prompt those who experience symptoms to talk about myositis with their family doctors, dermatologists, rheumatologists, neurologists, pulmonologists, and other medical professionals, whose lack of awareness has consequences. The typical person with an autoimmune disease like myositis withstands a three-and-a-half year quest and sees five doctors before receiving a correct diagnosis. Patients and their families — including frantic parents of drastically weakened children — have found that a great deal of physical and emotional damage occurs during this unnecessary wait.

Through the years, I have been determined to keep my spirits high and live life with a positive attitude. I asked myself one day: how can I give to others so they may endure some of the hardships without as much difficulty? I am highly committed to spreading awareness of myositis to the general public, forming relationships with others who suffer from the disease, and continuing to collaborate with them as a mentor in ways that I can share my story to inspire others. I am currently in remission and my motto is “touching lives one at a time,” to keep inspiring others to continue with their journey no matter how tough it gets at those difficult times. Lifesaving information is within everyone’s grasp. Be a part of Myositis Awareness Month. Our collective efforts can save a life, spare patients and families from undue burdens, and move us closer to a cure.

The author is the founder and president of United — A Divine Purpose, which supports patients and families with myositis and breast cancer diseases. She lives in Orlando.

9 comments on “Living with myositis, a mystery to many”

  1. 1
    Jo Hunnicutt on May 27, 2019

    I have dermatomyositis. Are there any studies that show what percentage of people with myositis are diagnosed with cancer?

    1. 2
      Linda Kobert on May 28, 2019

      Hello Jo. Studies show an estimated 20-30% of DM patients may also develop cancer. Those with certain autoantibodies are more likely to develop cancer. Here is a more complete discussion of this:

  2. 3
    Michele Johnson on July 16, 2019

    Recently, diagnosed with dermatomyositis, 8 months into this challenging experience. Prior to this experience the most I have ever had was a cold or flu once a year. Currently, working with doctors at Johns Hopkins. They are recommending CellCept. After reading and doing research, I am not sure this the correct path. Has anyone else used CellCept to reduce inflammation and redness of skin. I am African American and the sun is no longer my friend. Please help. Thank you in advance.

    1. 4
      Shenetta on July 29, 2019

      Hi Michele, my name is Shenetta and I also have dermatomyositis. I was dx in 2008 with minimal flare ups until recently. Truthfully, wasn’t taking any meds for treatment because I didn’t have a doctor that was willing to work with me and listen. I have recently found a doctor who does both!I have not used or heard of cellcept but I will look into it. I was 26 yrs old when dx, doctors wanted to do what they want and not hear me! So, one of the main things I did in my research I changed my diet! No pork, beef, limited sweets and increase foods that helps with inflammation, flushes and detox all natural things. Learn and pay attention to your body most importantly. Also, you are your best advocate! If you don’t feel that’s something you want to try ask for alternatives. Learn your blood work and the meaning of those test. The combination of those things will help tremendously.

  3. 5
    Terry Mikan on July 26, 2019

    I came down with dermatomyositus in 2001. My ck is now normal. Last ck reading on 05/23/2019 is 0.68. I am still on prednisone and methotrexate. I don’t have any muscle pain when I move. How is this possible? Been a long journey. Am happy to share what I have done to get this horrible disease under control.

    1. 6
      Lori roberts on August 15, 2019

      I was diagnosed with dermatomyositis about 8 months ago… I’ve had every kind of cancer test and scan… pet scan… female checks… manmogram.. etc… all clear .. they started me on the anti malarial drug… I took that for 5 weeks… then they increased my dosage and I had a reaction… I’ve now been taken off of that and my skin is still terrible with the redness and rash and also raised places … the new drug they suggest is cellcept…. my doctor refuses to discuss anything with me and I’m honestly afraid to just start taking a drug that has such negative side affects … help me feel more comfortable please… anyone taking this and any dude affects the have????

  4. 7
    William D Russell on August 2, 2019

    Hello there, l was diagnosed with polymyositis in January of this year. I’m gradually improving though too slow for me. The problem is that during my various hospital and rehabilitation stays l experienced problems controlling my bowels upon rising from a sitting position on a number of occasions in various degrees of control. I’m still experiencing this problem though to a much lesser extent now and was wondering if others with myositis experienced similar problems with their bowel movements.

    1. 8
      Linda Kobert on August 7, 2019

      Hello Russell. I am so sorry you are having so much trouble with this. The best way to communicate with others who are living with these sorts of issues is to post your questions on TMA’s private, secure online Community Forum. People there are very responsive and helpful. You can sign up here:

  5. 9
    Jana on October 23, 2019

    Celcept was not good for me stomach issue dragging myself around no energy hair falling out got off it fast! Rituxn is my go to for now! Much better for me! Good luck !

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