Young Autoimmune Patients Raise Awareness Amid COVID-19 Pandemic

As the COVID-19 pandemic continues to spread across the globe, young patients with autoimmune disease and other chronic illnesses are using the hashtag #HighRiskCovid19 to raise awareness about their conditions.

Although many media outlets and government officials have stated that young individuals need not worry about the coronavirus, and that it’s primarily older individuals who are the most at risk, immunocompromised young people are telling their own story. Whether they take immunosuppressants for their condition, or are at risk due to the nature of their chronic illness, these patients are asking their peers to keep them in mind when they consider venturing out instead of remaining in self-isolation.

Brittania, a 20-year old young woman from Jamaica, tweeted: ‘Hi, I’m 20 and I have Systemic Lupus Erythmatosus (SLE)/Lupus Nephritis. I take immunosuppressants to keep my body from attacking itself. I’m amongst those who have to self-isolate to stay healthy for a majority of this year. So please keep me/others in mind when you think you ‘can’t stay in’.

Sarah Elliott, from San Francisco, California, added: ‘I have multiple sclerosis (MS) and take an immunosuppressant drug for it. I also have severe asthma and take a controller medication as well. I have 2 kids and I would love to watch them grow up. Please help protect us!’

Nancy Mendoza, an autoimmune patient with Rheumatoid Arthritis (RA), also tweeted: ‘I’ve been on immunosuppressing meds for 15 years for rheumatoid arthritis. Stay home. Flatten the curve. People like me are depending on you.’

Others decided to use the trending hashtag to raise awareness on behalf of a loved one with a chronic illness. A man from Medicine Hat, Alberta, Canada, for example, implored: ‘This is my wife. She is on immunosuppressive infusion therapy battling ulcerative colitis and rheumatoid arthritis. She is among the high risk during this COVID-19 pandemic. I’m putting a face to the most vulnerable. TAKE THIS SERIOUSLY.’

Personally, I am also taking greater precautions as the coronavirus spreads further into our communities, since I take immunosupressant medication for Sjogren’s Syndrome and Hidradenitis Suppurativa. I also have asthma, which puts me at a greater risk for serious pulmonary complications, like pneumonia, since the virus is respiratory in nature. Thankfully, I’m able to work remotely, limiting my exposure to others, and my husband has taken on any duties that require us to set foot outside, including grocery shopping.

Do you or someone you love have an autoimmune disease, and are therefore at a greater risk for complications associated with the coronavirus? If so, please comment below and let us know how you’re handling this public health scare as a #HighRiskCovid19 patient.

Autoimmune Patients Urge Public to Take Coronavirus Seriously

Close-up image of the coronavirus (COVID-19) from the Centers for Disease Control & Prevention.
Image of the coronavirus (COVID-19) courtesy of the Centers for Disease Control and Prevention (CDC).

The coronavirus (COVID-19) pandemic has taken the world by storm, causing what many perceive to be a case of mass hysteria. But for those living with a compromised immune system, the ‘hysteria’ is not unwarranted.

Amber Beckley, a 33-year-old mother from Sandusky county, Ohio, suffers from a rare autoimmune condition called common variable immunodeficiency (CVID). The condition makes her bone marrow unable to produce the antibodies that fight against infections. As a result, she’s terrified of contracting the coronavirus, since she’s a high-risk patient.

“My immune system is at five percent,” said Beckley. “If I caught it, even with treatment from doctors and hospital and ICU, me fighting it off is just not going to happen.” 

Amber Beckley, a 33-year old mother, suffers from CVID, leaving her at-risk for death if she contracts the coronavirus.

Beckley also added that the only way to treat her condition is to get an infusion of antibodies from healthy patients, a treatment she’s been receiving for the last seven years. Unfortunately, her nurse has advised her against leaving the house, to reduce her risk of being exposed to COVID-19 – as a result, she can’t get the life-saving treatment she needs. She also thinks that healthy patients aren’t taking the disease seriously enough.

That’s a position with which Angela Michelle of San Antonio, Texas agrees. Michelle suffers from an autoimmune disease as well – antiphospholipid syndrome (APS), which causes clotting in her arteries and veins. The condition has caused her to have a stroke, and also affects her lung function by causing her to develop pulmonary hypertension. Having a lung disease puts her at an even greater risk if she were to catch the coronavirus, since the virus is respiratory in nature.

“I think it’s been really disheartening for us to see the general public not take it as seriously as we feel like it should be because they don’t think it’s going to affect them. And for us, it does affect us,” she said.

Angela Michelle of San Antonio, Texas, is an antiphospholipid syndrome patient who feels the public isn’t taking the coronavirus as seriously as they should.

Michelle had a medical procedure planned in San Diego, California, but since her flight was cancelled, she’s no longer able to have the procedure done. What really worries her is that medical facilities may become so overwhelmed dealing with the outbreak, that they won’t be able to effectively treat her should she get infected.

Heather Millen, a 42-year-old from Brooklyn, New York, has multiple sclerosis (MS), an autoimmune condition that damages the myelin sheath coating one’s nerves in the brain and spinal cord. She feels that she and others with compromised immune systems have been brushed off by media and politicians alike.

“I feel like people with MS and other people who are high risk are constantly being dismissed,” she lamented. “I feel like the coronavirus is being so underplayed.”

Heather Millen (R) pictured here with her sister (L), an autoimmune disease patient who passed away from H1N1 in 2009.

Millen’s own sister, Denise, also suffered from an autoimmune disease, but passed away when she contracted the H1N1 virus (also known as the ‘swine flu’) back in 2009. Seeing the global health crisis now brings back terrible memories of watching her sister’s body shut down.

“Any time people with MS get any kind of infection, it can be a trigger for their symptoms and make them worse,” said Amesh Amalja, MD and infectious disease expert at the John Hopkins Center for Health Security. “Many are on immune-suppressing medications…So if they do get infected, it could be severe.”

Dr. Murray Cohen, an epidemiologist, adds that it’s important to assess your personal risk for the disease, especially since even mild cases of the disease could lead to pneumonia.

“When we have pulmonary disease, coronary disease, autoimmune diseases — we’ve got no way to fight this virus since there is no treatment,” Dr. Cohen explained. “The only defense you have if you get infected is your immune system fighting that virus. One of you is going to win, and one of you is going to lose.”

That’s why it’s extremely important that even if you’re not high-risk for succumbing to the coronavirus, that you take precautions to help prevent the spread of the virus to those who are immunocompromised. Ultimately, ‘being seen’ is what autoimmune disease patients like Millen want.

“Those people that are being discounted by every news program and government official, they’re people. What about those people?” she countered.

Thank you for reading! If you’re an autoimmune disease patient, what precautions are you taking against the spread of COVID-19? Let us know in the comments below!

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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