Top News in Autoimmunity – Week of Feb. 13, 2019

Benefit Event Organized for New York Woman with Scleroderma

A benefit event has been organized by the friends of Krislyn Manwaring, a 25-year old woman with Scleroderma living in Erin, NY.

Scleroderma is an autoimmune condition that causes the body’s soft tissue to harden. Manwaring, who is now on oxygen, is in need of a stem cell transplant. However, her health insurance won’t pay for it.

The benefit event will raise funds to go towards Manwaring’s transplant procedure. According to the event’s Facebook page, over 200 attendees have already RSVP’d for the event.

Young Woman Shares Journey with Autoimmune Encephalitis

Tori Calaunan, a young woman from Las Vegas, shares her journey with anti-NMDA receptor encephalitis with the Autoimmune Encephalitis Alliance.

While in nursing school, Calaunan felt some weakness in her right leg, but brushed it off as nothing serious. As the weakness continued to worsen, she also experienced confusion and dizziness. She passed a neuro test and MRI, however, and doctors told her that everything was fine.

She eventually checked into the ER, and stayed there for a month before transferring to a hospital in California, where she finally received her diagnosis of Autoimmune Encephalitis.

Family of Young Man with Rare Autoimmune Disease Outraged Over Drug Price Hike

Will Schuller, from Overland Park, Kansas, was 18 when he began experiencing extreme weakness. An avid runner, he was pulled out of high school when he struggled to walk down the hall, and stopped being able to go up the stairs.

He was eventually diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), a chronic autoimmune disorder than affects muscle strength. LEMS is reported among 3,000 people in the US, and can dramatically impact one’s quality of life.

Schuller was prescribed a drug called 3,4-DAP, which made him feel better instantly. The drug was free as a result of an FDA program called ‘compassionate use’. The drug’s manufacturing rights, however, were sold to a company called Catalyst, which renamed the drug Firdapse, and raised the price to $375,000/year for the medication.

Schuller’s family decried the extreme price hike, stating that if it hadn’t been for this medication, their son would certainly be in a wheelchair. Senator Bernie Sanders of Vermont called the price increase a ‘fleecing of American taxpayers’.

Schuller is now a senior studying mechanical engineering at the University of Tulsa. Read more about his story here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Feb. 6, 2019

Early Onset Primary Sjögren’s Syndrome May Carry a Worse Prognosis

French researchers have discovered that patients diagnosed with early onset Primary Sjögren’s Syndrome may carry a worse prognosis over the course of the disease. Early onset is defined as a diagnosis before age 35.

The study, reported in Rheumatology, states that early onset of this autoimmune disease was found to be associated with a higher frequency of:

  • Salivary gland enlargement
  • Lymph node enlargement
  • Bleeding underneath the skin
  • Liver involvement
  • ANA (antinuclear antibodies, especially anti-SSA and anti-SSB antibodies)
  • Positive Rheumatoid Factor levels
  • Low C3 and C4 complement protein levels
  • Increased levels of immunoglobulin antibodies in the bloodstream

Furthermore, researchers also acknowledged that those with an early onset of the disease showed a worsening progression in their symptoms, whereas those with a later onset showed significant improvement.

Read more about this ground-breaking study here.

’90 Day Fiancé’ Star Ashley Marston to Undergo Additional Surgery Following Kidney Failure

Ashley Marston, star on TLC’s hit reality TV series ’90 Day Fiancé’, recently revealed that she is undergoing additional surgery following a health scare.

Although she did not reveal the nature of her impending surgical procedure, Marston did reveal that she has an autoimmune condition called lupus. Lupus is a disease in which the body’s own immune system attacks its vital organs. In Marston’s case, she suffers from lupus nephritis, which causes inflammation in the kidneys.

After being found unresponsive in her home last month, she was rushed to the hospital and treated for kidney failure. Her upcoming surgery is speculated to be related to this recent hospitalization.

Fans are wishing Marston the best with her surgery and recovery. Read more about her shocking story here.

Interested in more #autoimmunewarrior news? Visit my last news post, 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!