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,…
"There will be times when you feel like you've failed, but in the eyes, heart, and mind of your child you are supermom." -Stephanie Precourt Even when you feel like…
We have all heard about how LIFESTYLE FACTORS can drastically EFFECT HORMONAL BALANCE and ultimately IMPACT WEIGHT STATUS. We read tips and tricks from fitness gurus on social media all…
1. Leonard Trask Trask sufrió un incidente de equitación terrible cuando tenia unos 20 años que condujo a la inmovilidad y la deformación de su columna vertebral. Él entregó su vida…
“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…
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