Legendary singer and songwriter Toni Braxton sat down with publication The Grioto detail her ongoing battle with systemic lupus erythematosus, known as lupus for short. The seven-time Grammy award winner was diagnosed with the autoimmune disease in 2008, after she suffered a heart attack on stage during a live performance in Las Vegas.
“The doctors told me I could never perform again. I have systemic lupus. My lupus loves my heart. It loves my microvascular system. It loves my blood, so I get blood clots,” she explained. “The chronic pain and fatigue associated with it were overwhelming for me initially.”
The autoimmune condition affects more than 5 million people worldwide, including 1.5 million Americans. Lupus is known to affect the body’s major organs, including the heart, lungs, skin and more. Beyond the physical symptoms, however, Braxton said the disease took a toll on her mental health too.
“When I was first diagnosed, I felt that I had no one to help me,” she said. Braxton continued, “I always tried to be vocal and educate people. I remember being afraid and I don’t want anyone to feel that feeling I had.”
Though the condition initially caused her to pause her career, Braxton found relief with CBD, the compound found in medical marijuana, with helping to manage her chronic pain.
“I found that Uncle Bud’s doesn’t have THC, the stuff that makes you high. More importantly, with my body being inflamed and so on, it offers anti-inflammatory properties and for me, I need that.” She continued, “It can change your life because sometimes you just need hope. I’m so glad they finally made it legal. It’s a great thing because of the healing properties for people like myself.”
As for her advice on how to cope with having lupus, Braxton commented: “It’s not your fault. It’s nothing you did. It’s just what it is. It’s just what your body is or has become. There’s nothing you could have done to change it.”
Since her lupus symptoms have improved, she has returned to singing and has released a new album, Spell My Name in August 2020. She’s also been busy filming the reality TV series, Braxton Family Values.
Shelley Clark-Collins, a 56-year-old woman from Saint John, New Brunswick, Canada, is looking to undergo a high-risk procedure to treat her rare autoimmune disease.
Clark-Collins lives with dermatomyositis, an autoimmune condition in which her body’s own immune system mistakenly attacks her healthy cells, causing inflammatory, painful and degenerative changes to her skin and muscles. According to Johns Hopkins Medicine, symptoms of the disease include rashes and spotting on the skin, swelling, stiff joints, muscle weakness and aches, difficulty swallowing, voice changes, fatigue, fever, and weight loss. Dermatomyositis can also cause other autoimmune and connective disease conditions, like lupus, and increase the risk of developing cancer.
Dermatomyositis is extremely rare, affecting fewer than 10 in 1 million people, according to an estimate from the National Organization for Rare Disorders (NORD). The disease most often occurs in adults ages 40-60, and juvenile dermatomyositis occurs most commonly in children and youth between the ages of 5 and 15.
Because of its rarity, Clark-Collins had a difficult time getting diagnosed. As a hairdresser, she suddenly found that she was so weak, she could no longer hold up a blow dryer or stand for long periods of time. She was falling down frequently, couldn’t get out of the bathtub, or lift her bed sheets. She was later diagnosed with multiple sclerosis (MS) after a neurologist found a lesion in her brain.
“But what he was treating me with [for MS] wasn’t working,” explained Clark-Collins. After seeing numerous specialists, she was diagnosed with “everything but the kitchen sink,” she recalls, including cancer, arthritis, and Grave’s disease. A dermatologist even told her that she should see a psychiatrist for Empty Nest Syndrome as a result of her kids moving out.
Despite these setbacks, Clark-Collins was eventually correctly diagnosed with dermatomyositis through blood work and muscle biopsies. Since then, the disease has affected her health and wellbeing substantially. Prior to developing the disease, she was an avid marathon runner and outdoor enthusiast, enjoying kayaking, rock climbing, and skiing. Now, she says that walking to her car is a feat. She sleeps in a chair because getting in and out of bed is too difficult with her muscle weakness. She has difficulty swallowing and talking, and has suffered irreparable damage to her heart and lungs. She’s had a stroke, blood clots, and a life-threatening sepsis infection.
However, Clark-Collins has found hope in a new procedure being pioneered by Ottawa, Ontario-based Dr. Harold Atkins. The innovative procedure is a combination of intense chemotherapy and a blood stem cell transplant. The chemotherapy will destroy her diseased immune system, and the stem cells from her bone marrow will be removed, purified and re-injected into her body. It’s a risky and aggressive procedure that aims to reset her immune system – but there are no guarantees that it will work. With the COVID-19 pandemic still raging, re-setting her immune system also leaves her extremely vulnerable to contagious diseases, meaning she could easily die should she catch the virus.
Despite the risks, Clark-Collins says she’s “very excited,” and is looking forward to the possibility of reclaiming her life. As a mother of two adult children, she says “it’s been hard on [my kids] to watch me decline like that.”
Plus, she’s running out of options. She has developed a resistance to several of her medications already, she can’t take large doses of steroids for much longer, and her opioid painkiller can cause an addiction. She also goes to the hospital once a week for plasmapheresis, a procedure in which her plasma (the liquid part of the blood) is separated from her blood cells, and is replaced with new plasma. But this treatment isn’t guaranteed to work forever.
With this new treatment, the hope is that her dermatomyositis will go into remission. Clark-Collins says she dreams of being able to regain her independence, start running again, and just to be able to hug her children without excruciating pain.
“Just maybe [I’ll] get a little big of my life back,” she said hopefully.
According to the American Autoimmune & Related Diseases Association (AARDA), March is officially Autoimmune Disease Awareness Month (ADAM)! During this month, the organization works to raise awareness about autoimmune diseases among the general public. With increased awareness about autoimmune diseases, the AARDA says that they will be able to secure more funding for medical research, new treatment options, and improved patient diagnostics.
According to the AARDA, there are over 100 known autoimmune diseases, which are responsible for causing widespread chronic illness and pain. While many individuals have heard of at least one autoimmune disease, like rheumatoid arthritis, lupus, multiple sclerosis, type 1 diabetes, or Crohn’s disease, few members of the general public know that these conditions are autoimmune in nature, and all stem from the commonality of an overactive immune system.
There is also widespread misinformation about the term ‘autoimmune’. I once read on the Reddit forum r/autoimmune about a woman who, during a doctor’s appointment, told a nurse that she had an autoimmune disease. The nurse thought that this meant that the patient had HIV/AIDS, which is not an autoimmune disease, but rather an immunodeficiency caused by a virus. These misconceptions about autoimmune disease are another reason why it’s important to raise awareness and educate the public – and even healthcare professionals – about this cause.
While the exact number of autoimmune disease patients is unknown, it’s estimated that autoimmune conditions impact over 24 million Americans. An additional 8 million Americans have auto-antibodies, blood molecules that may predispose them to developing an autoimmune disease in the future. This isn’t counting the many individuals who go undiagnosed as a result of their symptoms being dismissed, a misdiagnosis, or due to their healthcare provider lacking knowledge about autoimmune disease.
Autoimmune diseases are also a leading cause of death and disability. Dr. Anthony Fauci, a leading allergy and disease expert, estimated back in 2001 that autoimmune disease treatment costs in the US exceeded $100 billion annually. While this may seem like a staggering figure, it’s possible that the true cost is much higher, since, as noted above, many individuals go undiagnosed or are misdiagnosed, and new autoimmune diseases are being discovered with each passing year. Furthermore, a more recent 2020 study showed that the incidence of autoimmune disease is on the rise in the US – so these cost figures (which are now 20 years old), are most likely continuing to increase.
The fact that autoimmune diseases pose an extreme burden on our healthcare system is just another reason that it’s important for the general public to be educated about these conditions, and why more resources need to be dedicated towards research and finding a cure.
So what can you do to help? If you or someone you love has an autoimmune disease, consider raising awareness (with the patient’s permission, of course), by posting about it on social media with the hashtag #ADAM for Autoimmune Disease Awareness Month. By sharing your story or the stories of others, you can raise awareness and be a voice for the millions of people suffering from autoimmune diseases worldwide.
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