Women and Autoimmune Disease: Combating Gender Bias in Medical Treatment

A female jogger runs outside to exercise good health for autoimmune disease

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 Treatment further 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!

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Teen with Autoimmune Disease Backing Bill to Allow Medical Marijuana in Schools

A teenage boy looks at Bill 331 and smiles alongside a government leader
Connor Scheffield, an autoimmune disease patient, is supporting a bill that would allow medical marijuana in Maryland schools

Connor Scheffield, a teen from Annapolis, Maryland, is backing a bill that would allow medical marijuana to be taken at a nurse’s office in Maryland schools. Currently, medical marijuana is banned from school campuses across the state.

Connor says that if it weren’t for medical marijuana, he wouldn’t be able to get through the school day. This is because the teen suffers from a rare autoimmune disease called Gastro-Intestinal Dysmotility.

GI Dysmotility is a painful condition that causes patients to not be able to digest food and nutrients properly and process waste. Dysmotility refers to the abnormal movement of food, nutrients and waste through the GI tract. When the body’s immune system attacks the nerves in the GI tract, transit through the GI tract becomes impaired. Symptoms of the condition include nausea, bloating, vomiting, diarrhea, constipation, abdominal pains, early satiety, and involuntary weight loss. Neurological symptoms may also accompany the disease.

According to Lawrence Szarka, MD, from the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota, GI Dysmotility can be disabling. “Patients who have [GI Dysmotility] are miserable,” commented Dr. Szarka. “They have no appetite. They have terrible abdominal pains and constipation. Often these patients undergo lots of diagnostic testing and multiple consultations.”

Like many autoimmune diseases, because GI Dysmotility involves the immune system, nervous system, and digestive system, patients must consult with a team of physicians spanning multiple specialty areas. Furthermore, treatment options are extremely limited, and tend to focus on treating the symptoms, like facilitating gastric emptying, rather than treating the disease itself. And while immunotherapies do exist, some patients who test positive for antibodies don’t always respond to the medication.

Young boy is hospitalized for GI Dysmotility, a disabling autoimmune disease
Connor receives treatment for GI Dysmotility, a rare autoimmune disease

Connor was one of those patients. His father, Michael Scheffield, says that his son tried everything before turning to medical marijuana to find solace, and that it’s the only treatment that’s worked so far. Connor takes it in the form of an oil tincture; he puts just a few drops on his tongue and takes it with a swig a water. “I need it every few hours,” said Connor. “It’s the difference between life and death.”

A young boy in the hospital hooked up to fluids as he undergoes treatment for GI Dysmotility
Connor Scheffield was confined to hospital beds as a child before finding solace in medical marijuana

Prior to using medical marijuana, Connor was confined to hospital beds. Since it’s currently illegal to use the substance at schools in Maryland, he must leave his school every few hours in order to take a dose. It’s also illegal for underage individuals to take medical marijuana without the presence of an adult, so when his parents are out of town, Connor has to go without. On those days, the teen says he can hardly get through a school day. “You can take opioids, you know, painkillers in a nurse’s office,” commented Connor. “But I can’t take my cannabis.”

House Bill 331, dubbed ‘Connor’s Courage’ would allow medical marijuana to be used in a nurse’s office in Maryland schools. Connor is currently one of 200 children who are certified to use medical marijuana in Maryland, and who could stand to benefit from this bill.

To learn more about Connor’s story and his experience with GI Dysmotility, please visit the CBS Baltimore website.

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions; Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions

Pop singer Sia recently revealed in a Tweet that she is battling chronic pain as a result of an autoimmune disease and another genetic condition.

In the Tweet, Sia said, “Hey, I’m suffering with chronic pain, a neurological disease, [and] ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote. “Life is fucking hard. Pain is demoralizing, and you’re not alone.”

Sia suffers from an autoimmune condition called Grave’s disease, which occurs when the body’s immune system attacks the thryoid gland. This results in hyperthyroidism, which is the overproduction of the thyroid hormone. Without treatment, the disease can result in heart problems like irregular heartbeat, blot clots, stroke, and heart failure, as well as eye health issues, like double vision, light sensitivity, eye pain and vision loss. It can even lead to thinning bones and osteoporosis.

In addition to Grave’s, Sia has Ehlers-Danlos Syndrome, a genetic condition and connective tissue disorder that can affect one’s bones, joints, skin and blood vessels.

Sia’s Tweet has garnered over 170,000 ‘likes’ on Twitter and has many fans responding with well-wishes and sharing their own experiences with chronic illness. One fan tweeted, “We love you so much Sia, you’re not alone either, please take care ❤ sending you lots of love and healing vibes.”

Her Tweet also draws similarities to Jameela Jamil’s Instagram message, in which she also revealed that she has Ehlers-Danlos Syndrome and another autoimmune disease called Hashimoto’s Thyroiditis, which causes hypothyroidism (the opposite of Grave’s Disease).

To learn more about Grave’s Disease, visit the American Thyroid Association.

Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

The President of the Philippines, 74-year-old Rodrigo Duterte, says he suffers from an incurable autoimmune disease. The condition, called myasthenia gravis (MG), is a neurological disease that causes weakness in the skeletal muscles, according to the National Institute of Neurological Disorders and Stroke. The disease can also affect eyelid movements, facial expressions, talking, chewing and swallowing.

Myasthenia gravis occurs when the body’s own immune system attacks the neurotransmitter receptors on one’s muscles. This prevents the neurotransmitters responsible for muscle contraction from binding to nerve endings, thereby preventing muscle contraction. This results in the widespread muscle weakness that is the hallmark of this disease.

Duterte believes that he inherited the condition from his grandfather, who had myasthenia gravis as well. “One of my eyes is smaller. It roams on its own,” he said, according to a transcript released Sunday by his presidential office.

Although Duterte appears to be in relatively good health, and myasthenia gravis can be managed with treatment, about 20% of the people with the disease will experience a health crisis at some point in their lives.

To learn more about myasthenia gravis, visit the MG Foundation of America website.

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