As most readers of this site are probably aware, a “rare disease” is classified in the United States as one that affects fewer than 200,000 people. It’s estimated there are…
Parker Wade is more than a cystinosis patient; he’s a Buckaroo, too! “Mothers of Buckaroos,” a Texas organization, banded together to raise funds for Wade, who received an expensive kidney…
La edad de las máquinas, estamos en ella! La tecnología se ha hecho cargo. Hace algunas décadas, cuando alguien hablaba de la tecnología, pensado en Orwell novela 1984, las películas…
When you think of 14-year-old boys, what do you think of? Rough-housing, raging hormones, an abundance of energy, maybe a little teenage rebellion? Often that’s the case, but Cooper Wilson,…
If you have a rare disease with no cure, it’s important to live your future today. Bradon Coy, 10, took that advice by travelling all the way from the United…
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…
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…
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…
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…
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…
I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…
Could it be? Could it REALLY be true? A breakthrough treatment for Lyme disease is here?! Well, according to what I read on the PR Newswire, it is. A specialty…
Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…
What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…
Does this word "Musashi-2" mean anything to you? If you suffer from aplastic anemia, it may be the most important phrase you'll ever learn. Scientists are very familiar with Musashi-2 and…
I recently read an article about Hemophilia A and B from the Cleveland Clinic. I thought it was incredibly helpful because, sometimes, I get confused about the differences between the…
Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve. If you have a child with cystinosis (or any chronic disease…
If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city,…
Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…
Dutch-American Reality TV star Yolanda Hadid, who is widely known for her supporting role on The Real Housewives of Beverly Hills, announced in the fall of 2015 that she was diagnosed…
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