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!

 

Happy New Year’s! What are your 2019 Resolutions?

Happy New Year’s Day!

Firstly, happy New Year’s Day and thank you to those of you who already follow the Autoimmune Warrior blog! I am so looking forward to 2019 and all of the adventures and experiences that are to come.

New Year’s Resolutions

What are your resolutions for 2019? One of my main resolutions is to focus more on my health and well being. For example, I’d like to go to the gym more, work out with my husband, and attend more fitness classes. I also want to cook more meals at home, and learn new healthy recipes.

Finally, I want to spend more time taking care of my autoimmune conditions- especially Sjögren’s Syndrome, which is the main condition that affects me. This involves attending doctor’s appointments, taking all of my required medications, and listening more to my body- even if it sometimes means saying ‘no’ to things that I want to do, but would over-exert myself.

Here’s to 2019!

So here’s to the year ahead – wishing all of you readers success in your endeavors this year.

What are your goals and aspirations for 2019? I would love to hear them. Comment below!

 

 

Top News in Autoimmunity – Week of Dec. 19, 2018

NMO

Edmonton fighter diagnosed with rare disease

Victor Valimaki, a 37-year old professional fighter from Edmonton, Alberta, Canada, was left crippled by a rare autoimmune disorder.

Although Valimaki has fought in over two dozen professional fights, leading him to a successful career as an Ultimate Fighting Championship (UFC) mixed-martial arts fighter, he was recently diagnosed with neuromyelitis optica (NMO), otherwise known as Devic’s disease.

This autoimmune condition affects the body’s optic nerves, spinal cord and brain. For Valimaki, the disease caused him to lose his vision, speech, and ability to walk. Although he has since regained his sight, he is still struggling with the other consequences of the disorder.

Read his full story and watch the video on CTV News Edmonton.

Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

An Italian biotechnology company named Altheia raised over 17 million euros this week to fund gene therapies that could potentially treat many incurable autoimmune diseases.

The company’s technology, which uses gene therapy to engineer bone marrow stem cells to express a molecule called PD-L1 that inactivates the immune system’s T cells. In other words, the molecule released will ‘hit the breaks’ on the body’s immune system, avoiding an immune system attack on healthy tissue.

Paolo Rizzardi, the company’s CEO, has stated that he expects clinical trials for autoimmune conditions such as multiple sclerosis and type 1 diabetes to begin in 2021.

Read more about this exciting new development on LABIOTECH.eu.

 

 

 

Top News in Autoimmunity – Week of Dec. 12, 2018

Man left paralyzed from the nose down by rare autoimmune disorder

David Braham, a 40-year old man from the United Kingdom, came down with a bad case of food poisoning, which he believes was triggered by eating chicken curry. A few days later, he was in the hospital being put into an induced coma.

It turns out, the food poisoning had caused him to develop a rare autoimmune condition called Guillain-Barre Syndrome. This disorder causes the body’s immune system to attack its own nerves, leaving the patient paralyzed.

Braham is re-learning how to do basic tasks, such as walking, washing himself and brushing his teeth, and is happy that he has been able to return home to his family. Read more about his harrowing story here.

Purdue University developing new treatment options for autoimmune diseases

Purdue University researchers have developed a series of molecules to help provide symptom relief to those with autoimmune conditions.

Mark Cushman, a distinguished professor of medicinal chemistry at the university, was the lead researcher in the study. His research team found that the molecules are more effective than pharmaceuticals currently on the market at affecting cell signaling and inhibiting autoimmune reactions. They have also shown to produce less side effects than conventional treatments.

Read more about this exciting discovery here.

MSU student shares her story with Alopecia

Payton Bland, a freshman student at Minot State University (MSU) in North Dakota, shares her story of acceptance and confidence while living with Alopecia.

Alopecia is an autoimmune condition that causes the body to attack its own hair follicles. The result can be extensive hair loss. In the case of Alopecia Universalis, the patient loses 100% of the hair on their body.

Oftentimes, those affected by this disorder suffer from anxiety. Payton, however, is undeterred by her Alopecia. Her bald head might cause her to stand out on campus, but she also stands out because of her upbeat personality and positive attitude.

Payton has spoken with young girls living with the condition, to inspire and empower them that it’s nothing to be ashamed about. She credits her family and faith in helping her stay confident in who she is. Watch her heartening interview here.

Top News in Autoimmunity – Week of Dec. 5, 2018

Sjogren’s non-profit seeks applicants for research grants

The Sjogren’s Syndrome Foundation (SSF) is now accepting applications for research grants. Two distinct awards are being offered: the SSF Pilot Research Award for $25,000 and the SSF High Impact Research Award for $75,000. To view more details and apply, see the SSF website.

Trump administration proposes access barriers to drugs critical to autoimmune patients health

The American Autoimmune Related Diseases Association (AARDA) reports that the Trump administration has proposed a Medicare rule that allows for step therapy and prior authorization restrictions. The AARDA states that such a rule would interfere with the patient-physician relationship, and can result in delayed treatment, increased disease activity, loss of function, and potentially irreversible disease progression for Medicare beneficiaries. Read more here.

Sharing the Journey series provides tips on explaining lupus

The Lupus Foundation of America has published a blog series Sharing the Journey to highlight the perspectives and personal experiences of those who struggle with lupus each day. In the series’ latest installment, contributors describe how they explain lupus to family, friends, co-workers, and others. Read their compelling stories here.

MS Society of Canada launches Vitamin D recommendations for MS

The Multiple Sclerosis (MS) Society of Canada has released a report detailing Vitamin D recommendations for those living with MS for at-risk populations.

Vitamin D, dubbed the ‘sunshine vitamin’, is produced by our skin through sun exposure, but can also come from other sources such as food (eggs, fortified dairy products, and fish) and supplements. The Society has long funded research on the relationship between Vitamin D levels and MS. The recommendations have been summarized into two reports; one for researchers and healthcare professionals, and another for laypersons. Read more under the Society’s research news.

5 Celebrities with Autoimmune Diseases

Did you know that the following celebrities have autoimmune diseases? Unfortunately, being an A-lister does not exempt you from having health problems. Read on to learn about their powerful stories of hope and living with chronic illness.

1. Selena Gomez

Selena Gomez.jpg

In 2015, it was revealed that Selena Gomez suffered from Lupus, an autoimmune condition that causes the body to attack its own vital organs, skin, joints and other tissues. Selena also disclosed that she was undergoing chemotherapy as part of her treatment.

Her life took a dramatic turn in 2017, when her doctors advised that she would need a new kidney. Thankfully, her best friend, Francia Raisa, generously donated her own kidney to Selena, undergoing an intensive, 6-hour organ transplant surgery. Although the surgery seems to have had a positive impact on Selena’s physical well-being, she admits that Lupus has also taken a toll on her mental health, causing her to experience depression, panic attacks and anxiety. She has become an advocate for Lupus awareness, and was co-chair at the 2017 Lupus Research Alliance Gala.

2. Venus Williams

Venus Williams.jpg

Tennis all-star Venus Williams shocked the world in 2011 when she revealed that she had been diagnosed with an autoimmune condition called Sjogren’s Syndrome. Sjogren’s primarily affects the body’s moisture-producing glands, resulting in symptoms such as dry eyes and mouth, severe fatigue, and joint pain.

Venus attributes the disease to taking longer to recover from injury, and was forced to withdraw from the U.S. Open in 2011 due to her symptoms. However, she believes in a “never give up” mentality, and has adopted a vegan diet to improve her overall health. Venus also became an Honorary Chairperson for the Carroll Petrie Foundation Sjogren’s Awareness Ambassador Program to raise awareness about the disease.

3. Jack Osbourne

Jack Osbourne

Jack Osbourne, son of heavy-metal singer Ozzy Osbourne and reality TV personality Sharon Osbourne, was devastated to learn that he had been diagnosed with Relapsing-Remitting Multiple Sclerosis in 2012.

Multiple Sclerosis (MS) is an autoimmune disease of the nervous system, and can result in a diverse range of symptoms, from mobility and speech issues, to pain and even blindness. Jack revealed in an interview that he was diagnosed with MS after noticing a black dot in his vision, that turned out to be optic neuritis, an inflammation of the eye nerves that resulted in 90% blindness in his right eye. Despite the diagnosis, Jack is determined to live a fulfilling life, and has partnered with a neuroscience organization to create the international campaign “You Don’t Know Jack About MS” to raise awareness about the disease.

4. Wendy Williams

Wendy Williams

Wendy Williams shocked viewers when she fainted on live TV during an airing of her daytime talk show, Wendy. When she returned after a three-week, doctor-ordered hiatus, Wendy revealed that she had been diagnosed 19 years prior with Grave’s Disease, which may have contributed to her fall.

Grave’s Disease is an autoimmune condition that affects the thyroid gland. Symptoms are varied, but may include hyperthyroidism (overactive thyroid), bulging of the eyes, heart palpitations, weight loss, and fatigue. During a segment with Dr. Oz, she discussed her struggle with the condition, and has used her platform to raise awareness for the disease.

5. Winnie Harlow

Winnie Harlow

24-year old model Winnie Harlow rose to fame at a young age as a contestant on Tyra Banks’ reality TV show, America’s Next Top Model. The Canadian model revealed that growing up, she had been a victim of vicious bullying due to having a chronic autoimmune skin condition called Vitiligo, which causes the destruction of melanocytes, resulting in a depigmentation of the skin.

Winnie did not allow her autoimmune condition to stop her modelling career, however, and has modeled for international brands such as Desigual and Swarovski. She has become an outspoken advocate for self-love, presenting a TedxTalk on the topic and participating in Dove’s Real Beauty campaign.