In June 2017, a film was released showcasing the story of a young girl named Kennedy Hansen who had Batten disease—a disease that causes a damaging buildup of lipofuscins in…
As a kid, I always had a pretty good hold on life. Despite my father being deployed during my formative years, I played sports, made good grades, and had great…
You may have heard someone say: “You don’t look sick.” Few phrases can be as disheartening to someone battling a lifelong, or chronic, illness. Blood diseases are just one such…
The spinal cord is a major part of the central nervous system, and when it becomes inflamed, transverse myelitis results. It often causes a band-like sensation across the trunk of…
One of the first steps toward fixing any sort of problem is identifying the cause. This is true of nearly any problem. This is true of the crack in the…
Feeling alone in your struggles is almost an inevitable side effect of living with a rare disease. You’re unlikely to have a support group in a very close vicinity and…
Allergan and Paratek Pharmaceuticals Inc. recently tested a drug called sarecycline for treatment of severe acne. The medicine is a tetracycline-derived antibiotic that is taken orally, and the best part…
Status epilepticus is a rare and sometimes fatal condition. About 60 percent of those with this super-refractory status epilepticus (SRSE) die, making it the most dangerous type of seizure. This…
Long have these cold-blooded, no-limbed reptiles bore a bad reputation; from the Bible to Disney to Indiana Jones. But are things about to change? According to a new French study…
I contacted my specialist and he hunted down my primary's email from her office staff. She never replied to his email. When I called her office again to inquire as…
When Ellen Ripley used the Caterpillar P-5000 Work Loader to pick up the xenomorph queen in the 1986 science-fiction masterpiece Aliens, who would've known the suit was inspiring the next…
According to QC Online, at six months old, Lorelei Lovelady was diagnosed with primary hyperoxaluria type 1 (PH1). Now, almost 9 months, the disease has caused her to need a new liver…
Happy Independence Day Weekend Everyone! We have the latest update on the UK cystic fibrosis fight for Orkambi. We also have a great contribution on the importance of taking care…
At the peak of my guttate psoriasis flare up, I had plaques covering my entire body. And when I say entire, I mean entire. My scalp was constantly littered with…
Bleeding is painful. It's not only painful, but probably worse, it's also just a nuisance and a hassle. Lucky for most of us, pressure, a bandaid, or, at worst, a…
According to the Salk Institute for Biological Studies, scientists have had a breakthrough in past efforts to develop a technique that can determine which proteins in a cell interact with…
The Annual European Congress of Rheumatology (EULAR) press conference showcased two very promising treatment options for psoriatic arthritis (PsA). Both treatments show promise in limiting the inflammation associated with the…
Jessie Parks is a writer for the Charleston City Paper. Her words are absolutely beautiful to behold. The reason she started her column? Her mother. who was diagnosed with Waldenstrom macroglobulinemia…
In the US, the rare condition glomerulonephritis is the third leading cause of the last stage of chronic kidney disease (CKD). A clinical trial sponsored by the National Institutes of…
Contagion Live (Infectious Diseases Today) recently discussed a journal article on the prevalence of atopic dermatitis. The simple summary? More research is needed to uncover just how common this condition is. BUT…
During this year’s International Workshop on chronic lymphocytic leukemia (CLL), Shih-Shih Chen, PhD, was recognized for her innovative research. Her research could mean a cure is around the corner for CLL.…
Annually, 13 out of 100,000 people are diagnosed with trigeminal neuralgia. Trigeminal neuralgia is described as a sharp and intense pain that can occur in the face or mouth. The…
By examining a zebrafish, scientists have found the gene that affects the maintenance of cone photoreceptors and visual functions in the eye. It might be the knowledge that’s been needed…
Researchers wanted to know how likely it is for patients to have fibromyalgia with ankylosing spondylitis (AS). As a result, they found that particular comorbidity to be common. Marina Magrey,…
The U.S. Food and Drug Administration (FDA) approved Biogen’s SPINRAZA™ (nusinersen) under Priority Review for the treatment of spinal muscular atrophy (SMA) in pediatric and adult patients. SPINRAZA is the first and only…
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