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.
According to the National Organization for Rare Disease, Congenital Heart Block, or CHB for short, is the interference of the transfer of electric nerve impulses that regulate the pumping of the heart muscle.
As long as electrical impulses are transmitted normally between the heart’s chambers – the atria and the ventricles – the heart contracts normally, allowing for blood to be pumped throughout the body. If the transmission of the signal is impeded, the blocked electrical transmission is known as heart block, or atrioventricular (AV) block.
Though heart block can happen to anyone of any age, it is called congenital heart block if it occurs in a fetus or newborn up to 28 days old.
Why Does CHB Occur in Children Born to Women with Autoimmune Disease?
Autoimmune-associated CHB has been found in a variety of maternal autoimmune disorders, including Sjogren’s syndrome, systemic lupus erythematosus, rheumatoid arthritis, antiphospholipid syndrome (APS), mixed connective tissue disorders, and undifferentiated connective tissue disease.
It is believed that CHB may result when maternal antibodies cross the placenta, enter the fetus, and attack the fetal cardiac conduction system. The antibodies that were originally produced by the mother’s body to fight infections mistakenly recognize parts of the fetal heart’s conduction system as foreign; for this reason, the immune system attacks and damages the tissues, resulting in inflammation and scarring, which in turn leads to faulty conduction.
What Is the Risk of Congenital Heart Block if I Have an Autoimmune Disease?
A 2017 study conducted by Chinese medical professionals Kai-Yu Zhou and Yi-Min Hua of the West China Second University Hospital, Department of Pediatric Cardiology, revealed that more than half of CHB cases (between 60 and 90%) are associated with maternal autoimmune disease.
Among the general population, CHB occurs in 1 out of every 20,000 live births – an incidence of only 0.00005%. The study found that autoimmune-associated CHB, however, occurs at much more frequent rates, affecting between 2–5% pregnancies with positive anti-Ro/SSA and La/SSB antibodies. The study also found that when a woman had a child with CHB, the recurrence rate of CHB was 12–25% for a subsequent pregnancy.
Mortality Rate & Treatment for Congenital Heart Block
If CHB is detected in utero by a fetal electrocardiography (ECG) and echocardiography, your OB/GYN may prescribe an adrenocorticosteroid such as dexamethasone, which works to decrease inflammation and the number of circulating maternal antibodies in the fetus.
Once born, other studies have shown that between that 64 and 70% of CHB survivors require surgery to permanently implant a pacemaker, a medical device which stimulates the heart to contract so that it can pump blood.
How to Prevent Congenital Heart Block
A 2016 report by the American College of Rheumatology states that there are no official guidelines about the prevention, screening, and treatment of CHB due to maternal Ro antibodies.
However, in the same report, it was stated that in a survey of 330 women with autoimmune conditions, 67% were told by their rheumatologists to use hydroxychloroquine (also known as Plaquenil) to prevent CHB. In addition, 62% were told to start the drug prior to pregnancy, in order to prevent the condition from developing.
In 2012, Shannon Boxx, a professional soccer player on the US national women’s team, was at the top of her career. She had earned medals at three World Cup games and two Olympic gold medals. However, unbeknownst to her teammates and coaches, she had actually been diagnosed with a debilitating autoimmune disease a decade prior, and another autoimmune disease just four years ago.
Boxx, now 42, was first diagnosed with Sjogren’s Syndrome in 2002, which causes widespread dryness, joint pain and fatigue, among other symptoms. She was later diagnosed in 2008 with systemic lupus erythematosus (SLE), or simply, lupus, which also causes a myriad of symptoms, including joint pain, muscle pain, fatigue, skin rashes, brain fog and major organ involvement.
Treatment for Lupus and Sjogren’s Symptoms
When interviewed by the publication The Undefeated, Boxx said that she manages her lupus flares by wearing compression pants, which help with the joint pain that she experiences in her knees. She also takes hydroxychloroquine, also known as Plaquenil, an anti-malarial drug that helps her to manage the joint pain associated with both of her autoimmune conditions. Boxx describes her joint pain as severe; “There were times, even when I was playing on the national team, I was having teammates cut my steak for me because it hurt so much on my wrist to actually hold onto a fork or a knife.”
Fatigue and brain fog are other symptoms that Boxx battles daily. “I used to be able to run forever, and now I can barely walk sometimes for a mile or two. And that’s pretty heartbreaking,” she confessed. Boxx has children, and she wants to be able to run around with her kids for as long as possible. “To know that there’s days that I can’t do it, it puts you in a really bad place, mentally,” she said. When asked about how the fatigue feels, she commented, “It is this feeling of a weight just sitting on you and just even to lift your head off the pillow takes so much effort and your eyes don’t want to open. When I was playing it felt like my feet were in quicksand.”
Autoimmune Disease Triggers
Boxx explained that one of the main triggers for her autoimmune flares is stress. Now that the coronavirus is grappling the world, the global pandemic has added another layer of anxiety to the mix, especially given that she is immunocompromised. As a result, the professional athlete is following local shelter-in-place orders, wearing masks diligently and ensuring to frequently wash her hands and stay six feet apart from others.
Another source of anxiety is the fact that hydroxychloroquine, the medication that she takes, has become more scarce as a result of it being explored for its potential use in treating COVID-19. “It makes me sad that there are a lot of people that are suffering or even worse because they now can’t get the medication that they need,” she said.
Boxx believes another potential source of her flares is over-exposure to the sun, though thankfully, most days are overcast in her home of Portland, Oregon in the Pacific Northwest. She also frequently experiences the so-called ‘butterfly rash‘ that is a hallmark of lupus, and can arise following exposure to sunlight.
Two other factors that must be considered in the pathogenesis of autoimmune disease are sex and race. According to the Sjogren’s Foundation, nine out of 10 Sjogren’s patients are women; similarly, the US National Library of Medicine states that nine out of 10 lupus patients are women. Lupus is also three times more likely to occur in African American women than white women. Boxx, for her part, is a biracial woman, so her gender and ethnic background may have played a part in developing autoimmune diseases.
Moving Forward with Chronic Illness
Though living with two different autoimmune conditions is undeniably challenging, Shannon Boxx is determined to live her best life. She retired from playing professional soccer in 2015, and is focusing on taking care of her own health, and spending time with her husband and kids. Though she has retired from professional soccer, she enjoys playing non-competitive games with other international teams and coaching kids’ soccer teams.
Boxx is also an advocate for those living with chronic illnesses, and actively participates in awareness campaigns for the Lupus Foundation of America. Commenting on her conditions, she said, “I’ve been able to deal with it, and still do something that I love…[lupus] has shown me that I can’t take [soccer] for granted, because that’s something that I love to do. If anything it’s given me perspective.”