If you or someone you know and love has Lyme, then you know how important it is for the medical community to have as much information as possible about it. Senator…
Sarcoidosis is caused by tiny granulomas forming most commonly in the lungs or lymph nodes and eyes. Doctors believe it is the result of the immune system trying to fight…
What makes YOU tick? Is it Lyme disease? It was for Jenny Buttaccio, who suffered for years with "an ever-growing list of strange symptoms" without answers. Until finally, a doctor…
A lot of people's journey to their Lyme diagnoses starts because they thought they had the flu. The symptoms for Lyme can be wildly contrasting, and two separate cases can look…
An on the Bel Marra Health website (you can check it out here), talks about the difference between ankylosing spondylitis (AS) and “just back pain.” (It also says that there may…
En un estudio reciente publicado por Prime Therapeutics, la compañía informó que el costo anual del tratamiento de un paciente con AEH es más de $ 300.000. Queríamos ilustrar las…
Like all genetic disorders, there aren’t many silver linings to having cystic fibrosis. The best we can say is that life expectancy for people with CF has improved thanks to…
Happy Friday Patient Worthians! We hope your Mother's Day was as awesome as ours. This week we have some awesome posts from our rare moms (#RareMom), those who fight their own…
Do you have hives (or a rash) that will not go away? And maybe inflammation of your joints, recurrent fevers, and perhaps enlarged lymph nodes? If you answered yes, you may…
For years, patient advocates and insurance companies have been outraged and fighting about a Lyme disease bill in Massachusetts that is controversial. The proposed bill, if passed, would provide long-term…
1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…
Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…
I had a sneaking suspicion that I was sick before any doctors diagnosed me with chronic, late-stage Lyme disease. The following playlist pretty much spells out my journey from feeling…
Es a través del arte que Rebecca Zook gestiona los desafíos físicos y emocionales de vivir con una enfermedad crónica. Después de 3 años de ver decenas de médicos especialistas,…
Every so often, I hear someone grumpily complain about their high cholesterol and what they're doing to get it under control. The great majority of people will respond to a change…
HAEi, is an international organization of patient organizations for those affected by C1-inhibitor deficiencies. During an HAE attack any part of the body can painfully swell. When this swelling affects…
Can the Protein in Your Urine Detect Lyme Disease? Living with Lyme is tough, but diagnosing Lyme disease is one of the biggest challenges for doctors. Peeing in a cup to assist in…
With apologies to the website of the same name, I effing LOVE science. I can’t do science but I love how it’s so incredibly complex that it regularly romps right…
For a child without a rare disease, a mother is a lot of things: chef, financial adviser, maid etc. All moms deserve kudos for their hard work. Raising a child…
In March, Delaware became the latest state to propose bills aimed at either combating Lyme disease or requiring expanded insurance coverage for the disease. Leaders in the state—which has one of…
There are three types of hereditary angioedema (HAE)—Type I, Type II, Type III. Original, right? Type I and II are the most common types of HAE. Type III is the rarest,…
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