The Grammy award-winning singer-songwriter, who was recently hospitalized for anaphylaxis — a severe allergic reaction — said that her hospitalization and subsequent doctor’s appointments led to her being diagnosed with several chronic health conditions, including Sjögren’s Syndrome, Ehlers-Danlos syndrome, mast cell activation syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS).
“My health has changed a lot since I got pregnant and gave birth,” the 27-year-old mom-of-one explained. “I started getting really, really, really sick — I’ve been kind of sick most of my adult life, but it started getting really bad [after pregnancy],” she said.
Sjögren’s Syndrome is an autoimmune disease in which the immune system attacks the body’s own exocrine (or moisture-producing) glands. Ehlers-Danlos syndrome is a group of connective tissue disorders that impact the skin, bones, blood vessels, organs, and other tissues. Mast cell activation syndrome occurs when the body releases too much of certain types of chemicals, such as histamines, in the body, resulting in repeated allergic or anaphylaxis episodes. POTS is a blood circulation disorder of the autonomic nervous system.
Halsey has previously shared details about her health struggles, including her battle with endometriosis. Back in 2017, she underwent multiple surgeries to help her with the condition.
She commented, “For those of you who have followed this battle of mine or who may suffer with it yourself, you know the extremes to which it can be mentally exhausting and physically painful.”
Halsey says she won’t let her health conditions stop her from living a full life or having a successful career, however. “If you suffer from chronic pain or a debilitating disease, please know that I have found time to live a crazy, wild, rewarding life AND balance my treatment and I hope so much in my heart that you can too,” she said.
Happy International Women’s Day! In honor of this day, I wanted to share a blog post specifically about women and autoimmune disease.
Women Suffer from Autoimmunity More than Men
According to the American Autoimmune and Related Diseases Association (AARDA) almost all autoimmune diseases are more prevalent in women than in men. For example, with the autoimmune condition systemic lupus erythmatosus (SLE), 9 out of 10 patients are women. Why is this, and what unique challenges does being a women present in the diagnosis and treatment of autoimmune disease?
Women Are More Vulnerable to Autoimmune Disease
According to a groundbreaking study from the University of Gothenberg, due to hormonal influences, women are more vulnerable to autoimmune diseases than men. The study found that the male sex hormone testosterone provides protection against autoimmune disease. Since men have ten times more testosterone than women, they have more protection from rogue immune cells than women.
The study explains that testosterone provides protection against autoimmune disease by reducing the quantity of B cells in the body. B cells are a type of lymphocyte (immune cell) that releases harmful antibodies. Testosterone provides protection against B cells by suppressing BAFF, a protein that makes B cells more viable. When testosterone is eliminated, the result is more BAFF, and thereby more surviving B cells in the spleen.
This is why testosterone is critical to the prevention of autoimmune disease, and why women are more vulnerable to autoimmunity due to having less of this hormone.
Challenges Women Face in Diagnosis and Treatment of Autoimmune Disease
Women face an uphill battle when it comes to the diagnosis and treatment of autoimmune disease. According to Penney Cowan, Chief Executive of the American Chronic Pain Association, physicians tend to dismiss women’s pain more than they do men’s. Women are often told that the pain is ‘all in their head’, or, in the case of gender-specific conditions, such as endometriosis, that the pain is just a ‘normal part’ of being a woman. Other research has found that physicians are more likely to attribute women’s pain to psychosocial causes, like stress or family issues, while attributing men’s pain to an underlying physical problem. Medical professionals also order more lab tests for male patients presenting similar symptoms as compared to female patients.
Diane Talbert, an African-American woman from Virginia, spoke to over 10 physicians for over a decade about the pain she suffers from psoriasis, an autoimmune condition of the skin, that she’s had since childhood. However, her complaints were dismissed as psychological or attributed to menopause. It wasn’t until she was in so much pain that she could no longer lift her arms above her head, that a Rheumatologist diagnosed her with Psoriatic Arthritis, a painful autoimmune disease that affects about 15% of patients with Psoriasis.
A Harvard Medical Review piece titled Women in Pain: Disparities in Experience and Treatmentfurther explored the frustrations women experience when trying to get a diagnosis and treatment. The author cites evidence that while 70% of chronic pain sufferers are women, 80% of all pain studies are conducted on male mice or men! Since women also experience different symptoms than men, such as in the case of heart attacks, physicians are also less likely to recognize the condition in women, and may prematurely discharge a woman who has just suffered a heart attack, since she’s not presenting the symptoms a man normally would.
The author also points out that because autoimmune diseases like multiple sclerosis, rheumatoid arthritis and other connective tissue conditions are chronic in nature, they’re not likely to just ‘go away’ on their own, and require active treatment to prevent further damage to one’s tissues. That’s why, if a woman doesn’t get a diagnosis due to gender bias, the consequences could be dire to her health.
Combating Gender Bias in Medical Treatment
So, what can we as women do in order to combat gender bias that medical professionals have against us? As I discuss in the blog post When Your Doctor Doesn’t Believe You, the key to ensuring you get the medical treatment you need is to stand up for yourself and be as assertive as possible. Another tip that I’ve found over the years is to bring someone else with you to your appointments that can be your advocate – someone who can attest to the fact that you’re no longer able to do the things you used to due to your medical issues. While it’s unfortunate that we as women have to rely on others to advocate for us, sometimes this is the anecdotal ‘evidence’ that a physician needs to hear in order to take our plight seriously. If your doctor still doesn’t budge, then find a new provider who will actually help you get the treatment you need and deserve.
Do you believe that you’ve experienced a medical bias when getting a diagnosis or treatment for your autoimmune condition? Please share your experience by commenting below!
A group of Italian researchers based out of Sapienza University in Rome have discovered a link between endometriosis and several common autoimmune diseases.
According to the Endometriosis Foundation of America, endometriosis is a menstruation-related disease that primarily affects women in their reproductive years. The disease occurs when tissue similar to the endometrium (the lining of the uterus) migrates outside of the womb, where it shouldn’t be. This results in a variety of symptoms, including inflammation, severe cramping and pain, long, heavy periods, and infertility. It can also cause other symptoms, such as nausea, vomiting, bowel and urinary disorders, chronic fatigue and pain during sexual activity.
The exact cause of endometriosis is poorly understood. While many theories have been suggested, this study investigated the prevalence of common autoimmune diseases among Italian women with endometriosis. The study compared 148 women with endometriosis (the case group) to 150 who did not have the condition (the control group). The women in the study ranged from 18-45 years of age, and those who had endometriosis suffered from varying degrees of the disease.
The study found that in the case group, there was a ‘significantly higher’ prevalence of autoimmune diseases such as systemic lupus erythematosus (SLE), celiac disease, and Hashimoto’s thyroiditis, as compared to the control group not affected by endometriosis. Inflammatory Bowel Disease (IBD), however, was not found to be linked with endometriosis.
The main limitation of this study is the small sample size. Further studies must be done with a larger group in order to prove that autoimmune activity is responsible for the development of endometriosis. However, this study is helpful for physicians to consider the possibility of autoimmune conditions that may be co-occurring in patients with endometriosis.
This blog post is dedicated to Jenni Rempel, a classmate of mine who passed away from endometriosis four years ago. Before she passed away, Jenni produced this video to educate others about this painful disease: Help Me Get My Life Back from Endometriosis.