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!

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!

Related blog posts:

Toddler’s Strep Throat Triggers Neurological Autoimmune Disease

Nate Kenoe, pictured above, developed a frightening autoimmune disease after strep throat

Nate Kenoe was a vibrant, energetic 4-year-old boy. Unfortunately, he had had a string of illnesses, testing positive for strep throat five times over the course of eight months. Each time, it wasn’t immediately clear that Nate had strep throat- oftentimes, he didn’t even have a sore throat! Instead, he presented with less common symptoms, such as bad breath or a sore on his butt. When he would finally get diagnosed with strep throat, he had to take a less effective antibiotic treatment, due to his allergy to penicillin.

Eventually, Nate developed even more disturbing symptoms that weren’t in line with strep throat. He began to have sensory issues, feeling pains in his feet as if he were walking on rocks, experiencing coldness in his shoulders, and other tics. He also had dramatically changed behavior, including vomiting at the sight of food, urinating multiple times an hour and banging his head.

Thankfully, an attentive pediatrician recognized Nate’s symptoms as pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection, known as PANDAS for short. PANDAS is a little-known autoimmune disease primarily occurring in children between the ages of 3 and 12. With this disease, strep throat opens the blood-brain barrier, allowing abnormal immune cells to enter the brain and cause neuro inflammation. It has been compared to autoimmune encephalitis (AE), another autoimmune neuropsychiatric disorder.

The PANDAS network estimates that 1 in 200 children could have PANDAS; however, this autoimmune condition is often under-diagnosed or misdiagnosed due to its similarity with other conditions such as Tourette’s syndrome and Obsessive-Compulsive Disorder (OCD). Nate’s own mother, a pediatric nurse, hadn’t even heard of the condition before.

Nate received antibiotics, anti-inflammatory medications and had a surgery to remove his tonsils as a treatment for his PANDAS. As her son received treatment, his mother learned that PANDAS is in fact a controversial disease. Many physicians are skeptical that this autoimmune disease even exists, while others believe that there needs to be a standardized method for diagnosis and treatment.

One year later, Nate is faring much better than last year. However, if he gets sick, such as with a cold or virus, it will trigger another autoimmune ‘flare’ resulting in more sensory issues. Ultimately, Nate’s family hopes that by sharing his story, they can raise awareness about PANDAS, and in turn, help the disease get more research funding.

To learn more about PANDAS and Nate’s story, click here.