Top News in Autoimmune Disease – June 1, 2019

Dr. Dale Lee is the Director of the Celiac Disease Program at Seattle Children’s Hospital

Youth Take On Celiac Disease Through Outreach Program

Last month was Celiac Disease Awareness Month. While Celiac is one of the most common autoimmune diseases, experts at the Seattle Children’s Hospital estimate that for every diagnosis, eight cases are overlooked.

As a result, the hospital has put together an outreach program that allows youth with Celiac disease the opportunity to raise awareness, organize support groups, and mentor other youth with the disease.

There are currently 11 youth members on the Celiac Youth Leadership Council (CYLC), and one of their current initiatives is running a gluten-free food drive for a local food bank.

The most common symptoms of Celiac disease include abdominal pain, diarrhea, constipation, weight loss, nausea, and fatigue. Other symptoms include anemia, joint pain, arthritis, osteoporosis, peripheral neuropathy, seizures, canker sores, skin rashes, fatigue, depression and anxiety. In children, the disease can also cause irritability, stunted growth, delayed puberty, and dental damage.

To learn more, click here.

Asaya Bullock (left) pictured here with his sister, is in grave need of a bone marrow match

7-year-old with Rare Autoimmune Disease Needs Life-saving Bone Marrow

Asaya Bullock, a 7-year-old boy from New York, is searching for a donor willing to donate matching bone marrow.

Asaya was born with a rare, life-threatening autoimmune disease called IPEX syndrome. Symptoms include joint pain, body aches, memory loss, fatigue and stomach problems. Doctors said he had two years to live, but, miraculously, he is still alive seven years later.

A bone marrow transplant would greatly help Asaya’s condition; however, since he is of mixed ancestry (part African part Caribbean), finding a matching donor is proving to be a challenge. According to Be the Match, an organization that operates the world’s largest bone marrow registry, the more genetically diverse an individual is, the more difficult it is to find a matching donor.

To learn more about Asaya’s story and how you can join the Be the Match registry, click here.

Monique Bolland describes her harrowing journey living with Multiple Sclerosis (MS)

Australian Woman Describes Her Journey with Multiple Sclerosis

Monique Bolland, 36, from Australia, shares her story living with Multiple Sclerosis (MS).

Bolland was first diagnosed with this incurable autoimmune disease when she was just 22. At the time, she didn’t quite comprehend the severity of her diagnosis.

She says that she first realized how bad her MS symptoms were when she was cutting bread and accidentally cut her hand, but didn’t even notice as a result of the nerve damage and numbness caused by the disease.

MS impacts an estimated 2.5 million people worldwide, and 70% of MS patients are female. Symptoms include impaired motor function, numbness, fatigue, heat sensitivity, optic nerve damage, and more.

Bolland says that living a healthy lifestyle is imperative to managing her MS symptoms. This includes consuming a diet rich in vitamins D, B12 and omega-3 fatty acids, reducing stress and inflammation, and staying active. She also gets monthly injections of Tysabri, an immunosuppressive drug. In addition, she launched a nutrition supplement and health product line called Nuzest with her father, which supports MS research.

To learn more about Bolland’s story, click here.

Actress Nicole Beharie reveals autoimmune disease caused her exit from hit show

Actress Nicole Beharie Exits Show due to Autoimmune Disease

Nicole Beharie, famed actress on Fox’s hit show, Sleepy Hollow, confessed to fans on Instagram that she left the show abruptly as a result of an autoimmune disease she has been keeping secret for the last five years.

Although Beharie didn’t reveal the exact autoimmune condition she has, she states that it caused her to experience skin rashes and fluctuations in her weight. As a result, her character on the show, FBI agent Abby Mills, was killed off in the season 3 finale, allowing her to take a much-needed break for her health.

Beharie says setting boundaries and limitations, as well as changing her diet, were key to improving her physical and mental state.

To read more about her story, click here.

Travis Frederick missed an entire NFL football season as a result of his autoimmune disease

Dallas Cowboys Frontman Tackles Autoimmune Condition and Injuries

Travis Frederick, the Dallas Cowboys’ all-star center, revealed that he suffers from an autoimmune condition called Guillain-Barre syndrome. This caused him to miss playing an entire NFL football season, while a backup played in his place. He also revealed he had two surgeries during this time.

Frederick is now expected to return to the starting lineup this upcoming season. However, since he is still experiencing lingering effects of Guillain-Barre, he is being brought back on to the field slowly.

To learn more about Frederick’s story, click here.

Working with a chronic illness

Working with a chronic health condition can be a challenge. Sometimes, you may not feel ‘up to’ working, but you still have to put in a full day on the job. There are times when you feel sick— but perhaps not sick enough to warrant taking a sick day. Even if you do take time off, there may be judgments from co-workers that don’t believe that what you’re going through is real, especially invisible illness symptoms, such as pain.

When looking back through my life, I can see various ways in which my chronic illness, Sjögren’s Syndrome, has impacted my work. For example, I experience significant joint pain after doing hours’ worth of typing. Also, the stale office air worsens my dry eye and mouth symptoms, causing me to use copious amounts of eye drops and saliva-stimulating medications. Also, debilitating fatigue affects my energy levels and impacts my ability to produce as much as I want to.

As a result, I have had to adjust my lifestyle in order to stay healthy and maintain my productivity while on the job. Here are a few tips that have helped me:

  • Getting a good night’s rest – Before being diagnosed with Sjögren’s, I could get 4-5 hours of sleep per night, and still be productive and alert throughout the day. But no more. I must get at least 7-8 hours’ worth of solid rest to help combat against disease-related fatigue.
  • Being mindful of my eating habits – With a chronic health condition, I need to be extra mindful of what I’m putting into my body. While others may be able to sustain themselves on caffeine and sweets- I know that doing likewise isn’t going to make my body feel any better; so I pack a healthy lunch, and choose the healthy option when I eat out.
  • Organizing my treatment plan – I think it’s extremely important to be organized when you have a chronic illness. For example, I record my doctor’s appointments on my calendar and stay on top of taking my medications and supplements, which it vital to treating my symptoms.
  • Staying active – Exercising, while also holding down a job and managing my chronic illness, can be a challenge. However, I know it’s important to stay active, because it makes my body stronger and more resilient, and I’m able to complete tasks using less energy as a result. So, I go to the gym and take walks around my neighborhood and in the business park on my lunch break at least a few times a week.

When you have to leave your job

I recently started following a YouTuber by the name of Samantha Wayne. In her YouTube channel, called Live, Hope, Lupus, she discusses having to leave her full-time job as a result of her autoimmune condition. You can check out the video here.

Having to leave a job due to health reasons can be devastating. In addition to the financial benefit of having a job, many individuals (especially Americans) rely on their job to pay at least partially for their costly health insurance premiums. I have found that there is also a psychological benefit to having a job; it gives me confidence, makes me feel like I am ‘valuable’ and helping others, and feel like I am a productive member of society. Although one shouldn’t rely solely on a job for their self-esteem, I do believe that it’s a contributing factor.

In Samantha’s case, she transitioned to several part-time business and work opportunities in order to earn a living, and have more time and flexibility to manage her lupus and Sjögren’s symptoms. Exploring other work alternatives, such as freelancing, part-time and contract work, or starting your own business, might be an ideal way to balance both your health and financial commitments.

Final Thoughts

If you are finding it challenging to keep up with managing both your chronic health condition, work and other life demands, I would encourage you to implement the tips above to see if it makes a positive difference. Don’t let your disease get in the way of accomplishing your dreams and goals!

How do you manage your chronic illness while working? Has your health impacted your ability to do your job? Do you have any additional health management tips? Comment below!