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.