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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How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.

10 Facts about Rheumatoid Arthritis (RA)

According to the Mayo Clinic, Rheumatoid Arthritis (RA) is an autoimmune disease that occurs when one’s body attacks the synovium (the lining of the membranes surrounding one’s joints). Read on to learn 10 interesting facts about this chronic autoimmune condition.

1. Joint pain is a hallmark of the disease

The John Hopkins Arthritis Center states that pain and swelling of the small joints—such as those in the hands and feet—is a hallmark symptom of the disease. However, any joint in the body can be affected by RA. Other than pain and swelling, the inflammation caused by RA can lead to stiffness, deformity, and even loss of function. Joint damage occurs in 80% to 85% of affected patients, with the majority of the damage occurring in the first two years of developing the disease.

2. RA doesn’t just affect the joints

Although joint pain is the most common symptom, RA affects more that just one’s joints. Other manifestations of the disease include eye inflammation, a low white blood cell count, subcutaneous nodules (skin lesions), fatigue and lung disease. What’s more, RA is known to be associated with a higher risk of lymphoma (a type of cancer), anemia (low iron levels), osteoporosis, and depression.

3. It puts patients at risk for death

Left untreated, RA increases one’s risk of mortality. The John Hopkins Arthritis Center states that untreated individuals with RA are twice as likely to die compared to unaffected individuals of the same age. Furthermore, RA can reduce life expectancy by 10 to 15 years.

4. It’s more common than you think

RA is in fact the most common type of autoimmune arthritis, affecting more than 1.3 million Americans. Approximately 75% of all RA patients are women, and 1-3% of the American female population is predicted to develop the disease over the course of their lifetime.

5. People of all ages can be affected

A common misconception of RA is that it’s an ‘old person disease’. Not true. The onset of the disease most commonly occurs in those ages 30 to 50; however, anyone of any age can develop the condition. Furthermore, juvenile rheumatoid arthritis, which occurs in those ages 16 and under, currently affects 50,000 children and youth in the U.S. alone.

6. There are other types of arthritis too

RA is mistakenly believed to only affect senior citizens, since it is often confused with osteoarthritis, which occurs when the protective cartilage that cushions the ends of your bones wears down over time. Other types of arthritis include psoriatic arthritis, ankylosing spondylitis, and gout. To learn more about each of these different types of arthritis, visit the John Hopkins Arthritis Center’s website.

7. There are multiple risk factors

Although the exact cause of RA is unknown, scientists believe that a combination of genetic and environmental factors may put individuals at a greater risk of developing the disease. Beyond being female and middle-aged, other risk factors include: having a family history of the disease, smoking, exposure to substances like asbestos or silica, and obesity.

8. There are a variety of treatment options

Rheumatologists often prescribe non-steroidal anti-inflammatory drugs (NSAIDs) to reduce the inflammation and pain associated with RA. Other prescription medications that treat RA include corticosteroids, disease-modifying antirheumatic drugs (DMARDs), and biologic response modifiers. Non-pharmaceutical treatment options include physical therapy, chiropractor treatment, and in some cases, surgery. To read more about these treatment options, visit the RA Support Network website.

9. The prognosis of the disease varies

Some patients with RA report only mild symptoms that place few limitations on their everyday lives. However, other patients experience significant pain and impact on their lives, including their ability to work. One of the main factors that predicts the disease prognosis is early detection. The earlier RA is identified, the sooner it can be effectively treated and joint inflammation and damage can be reduced.

10. There is hope

If you or a loved one has been diagnosed with rheumatoid arthritis, check out the American College of Rheumatology’s patient education videos to learn more about the condition. Additional patient and caregiver resources can be found on their website, including fact sheets, case studies and current news.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share, and comment below!

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