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 Jan. 2, 2019

American Teacher in Thailand Paralyzed by Rare Autoimmune Disease

Caroline Bradner, a 22-year old recent graduate from the University of Mississippi, was left paralyzed after developing a rare autoimmune disease while teaching English at a Thai school.

She was diagnosed with an autoimmune condition called Guillain-Barré Syndrome (GBS) shortly before Christmas. Since then, she has been paralyzed from the neck downwards and is unable to move.

Her family reports that she has a long road to recovery ahead, and has even started a GoFundMe page to help with medical costs, including disability-related transportation, hospitalization, and rehabilitation fees, after Caroline’s insurance claims were denied. The fund has since surpassed its $70,000 goal.

Guillain-Barré syndrome affects 1 in 100,000 people each year, and its affects can be devastating. Read more about Caroline’s harrowing story here.

Scripps Researchers Find Molecular Cause of Autoimmune Disorders

Scientists at Scripps Research have found a molecular cause for a rare group of autoimmune disorders. Patrick Griffin, PhD, professor and co-chair of the Department of Molecular Medicine at Scripps Research, explains that the discovery has improved scientists’ understanding of the role of the interferon protein in the development of several autoimmune conditions. The autoimmune diseases included in the study were:

Singleton-Merten Syndrome (SMS)
Aicardi-Goutières Syndrome 
Familial Chilblain Lupus
Proteasome Associated Autoinflammatory Syndromes

The scientists demonstrated through their study how mistakes in the body’s molecular proofreading system can lead to out-of-control interferon protein signaling, thereby inducing the above autoimmune disorders.

Read more on the Science & Technology Research News website.

 

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.