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…
Too often rare diseases such as tardive dyskinesia (TD) are treated with medications and therapies that were made for other illnesses. This occurs pre-diagnosis, by physicians who have never seen…
According to the Daily Mail, Clare Fray has alpha-1 antitrypsin deficiency. But for years she thought her symptoms were just a part of normal life. She suffered from numerous chest…
It’s amazing how much we take for granted. Eating. Seeing. Walking. There are a million and one things that can go wrong with the human body, and until one of…
8-year-old Carter Anderson has PKAN. He’s only had his official diagnosis for about a year, as his parents were first told he had cerebral palsy. Since Pantothenate Kinase-Associated Neurodegeneration (PKAN)…
A phase 3 clinical trial has produced positive results for cutaneous T-cell lymphoma (CTCL) patients. The drug tested is called brentuximab vedotin (Adcetris). Specifically, the drug was created to treat…
Dear Primary Care Clinics, Rare Disease Warriors Are Not Pariahs; We Are Your Patients. -From a SPS Fighter As a rare neuromuscular disease patient, who fought 21 years for a…
According to CBC, Marie-Eve Chainey was on dialysis six out of seven days a week. For 15 years, this was her life. It was a necessary feat to control her…
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