Two years ago, my phone rang in the middle of the night and our journey with heterozygous familial hypercholesterolemia, or HeFH, began. My immediate thought was I'd won the Publisher's Clearinghouse Sweepstakes…
Schnitzler syndrome was initially identified in the 1970s. Patients usually have fever, bone and joint pain, fatigue, anemia, enlarged liver and spleen, and a strange rash. The rash is resistant to…
Mental health is a sensitive topic for many people with dystonia since a lot of cases are initially mistaken for a psychological condition. In the vast majority of cases, dystonia is a neurological…
When it comes to getting the care you need for a rare disease like Parkinson’s (PD) or dystonia, the doctor you see is VERY important. In some cases, it’s enough…
There’s nothing quite like somebody who “gets it,” when you’re feeling low because you have Ehlers-Danlos Syndrome (EDS). Thankfully, there are organizations out there created by—and dedicated to—being there for…
Tres hurras! GRACIAS Universidad de Kentucky, Addgene, y la Universidad de Pennsylvania Esperamos y esperamos y esperamos a que la investigación aportara descubrimientos con el tiempo. Pero estas tres instituciones…
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