Think you know all there is to know about ankylosing spondylitis (AS)? Think again. New research has revealed that people with AS are at a greater risk for having acute anterior…
Amanda struggled for years to understand the pain and swelling that she kept experiencing. Her doctors couldn't figure out was wrong and she never knew why her throat would sometimes…
Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…
Meet Yoni Masel- RareDisease Patient, Advocate, Activist & Blogger His goal: To raise awareness for rare diseases, and to help others by educating and sharing #PatientWorthy information. Yoni Maisel (Yonatan Maisel)…
You can lead a healthier lifestyle and help decrease some of your A.S. symptoms and frequency of flare ups by following these steps. 1. Exercise [iframe src="http://giphy.com/embed/NnwBN2NdkVx5K" width="500" height="237" frameBorder="0"…
Over time, you may have noticed that you have neck pain, and that you’re stiffer in the morning than you are by the afternoon. The most common symptom of ankylosing…
Living the dream as a future baseball All Star, Franklin Gutiérrez, a.k.a. "Guti" was on top of the world. In 2000 the Cleveland Indians signed amateur free agent Franklin Gutiérrez,…
Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…
Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…
Doctors at Global Hospitals in Mumbai, India, have achieved a rare feat in spinal surgery. For the first time, an expert team of surgeons performed minimal access spine surgery on…
How did CVID patients earn their stripes? Zebras are viewed as unique. They are only found in limited locations with specific environments; they flaunt stripes that are iconic to their…
Suffering From HAE?! Biofeedback Reporting May Save Your Life! There's a lot of buzz on BioRx, a national specialty pharmaceutical company, based in Cincinnati, Ohio. It's established a successful Biofeedback…
In the fall of 1991, Kathy gave birth to a beautiful baby boy named Isaac. But Kathy and her husband knew something wasn't right. Isaac was their third child. Born…
Living with Common Variable Immunodeficiency Disease CVID is challenging enough, but when you factor in medical expenses... Whoah! Check out these upcoming fundraisers and events for super cool kids living with CVID!…
Psychiatrist Dr. Jennifer Pate, 47, receives life-saving intravenous immunoglobulin infusions every three weeks. This is not by choice, because without them, her immune system is defenseless against potentially lethal infection. Pate…
We all turn to YouTube here and there; for a good laugh, an informational mini segment on the newest word added to Urban Dictionary, or a clip from the Saturday…
Pills and Parfaits: How probiotics could make living with CVID a little easier. Between the far-too-frequent infections associated with CVID and the reoccurring gastrointestinal issues, many patients find themselves on…
5 Questions you’re tired of hearing when you have CVID... “So you have respiratory AND digestive issues?” Yes. Both. Trust me I’d pick one if I could. “…
Ahh the age of machines, yep we're in it. Technology has taken over. A few decades ago, when someone talked about technology, you thought about Orwell's novel 1984, science fiction movies about machines and artificial intelligence…
Meet the Attwood family. Out of the 8 family members present, 4 of them are living with Hereditary Angioedema. The heart of the family is led by a strong women…
Ankylosing Spondylitis is no joke. It is a serious condition that can cause a lot of pain. You wouldn't guess it from these twitter users who are making light of…
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