March is Autoimmune Disease Awareness Month

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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The Link Between Congenital Heart Block and Autoimmune Disease

Congenital Heart Block (CHB) is a rare but serious condition that occurs more frequently in newborns born to mothers with autoimmune disease. Image courtesy of Insider.com.

What is Congenital Heart Block?

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

The perinatal mortality rate of a newborn with CHB is up to 30%, and even higher in the presence of endocardial fibroelastosis (EFE) or dilated cardiomyopathy (DCM), which are other potential complications associated with CHB.

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.

Another study published in The Journal of the American College of Cardiology stated that hydroxychloroquine reduces the recurrence of CHB below the historical rate by more than 50%, further demonstrating the promise of this drug in the prevention of CHB.

Have you or someone you love been affected by congenital heart block (CHB)? Let us know in the comments below!