Your health is important—really important—so naturally, you want to make the best decisions for your body. However, at times, that gets tricky, especially if you have a compromised…
Primary Immune Deficiency and Dysautonomia - Living With a Rare Disease Ilana Jacqueline looks like a perfectly healthy young woman, but looks can be deceiving. It took 19 years before…
Chronic illness can be difficult to explain to your child. The rarity and persistence of the condition as well as the limitations that it imposes on them, can be hard…
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)…
Upon getting a diagnosis of a chronic illness, like CVID, or Common Variable Immune Deficiency, it's easy to get overwhelmed. Bogged down by questions in your head--What do I do…
Living with CVID? Learning to manage? PatientWorthy is looking for you on Instagram if you are living with Common Variable Immunodeficiency Disease, CVID. #PatientWorthy to share your photos with us! And…
Her Brother Said The Diagnosis Was Impossible; She Wasn't So Sure In February of 2006, Sheryl Stein of Arlington, Virginia, knew something was wrong. She was suffering from nosebleeds and…
Is SubQ part of your CVID treatment plan? Have you ever run out of numbing cream before an injection? Are you a fan of Jim Carey? If you answered, "yes" to…
Meet Amanda! Amanda’s vlog (video blog), ShAMANDAgans, helps her keep in touch with friends and family and share her story. She’s an ambitious and cheerful graduate student; going to…
Runner David Brumley was diagnosed with Common Variable Immune Deficiency (CVID) in 2008, and figured getting in shape couldn't make his health any worse than it already was. He has been…
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…
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…
They say pictures are worth a thousand words. Scroll through these images for a chuckle. Who doesn't love naps? When thinking about how impossible your diagnosis was... Out and about…
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!…
Common Variable Immunodeficiency Disease CVID is a rare disease, affecting 1 in 25,000 to 1 in 50,000 people worldwide. Finding information about the chronic condition can be challenging, especially because…
Have you ever wondered what it’s like having Common Variable Immunodeficiency Disease (CVID)? This video explores day-to-day life from the point of view of Keith Finch who was diagnosed with…
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. “…
It is through art that Rebecca Zook manages the emotional and physical challenges of living with a chronic condition. After 3 years of seeing dozens of medical specialists, the Texas…
Just because Burger King ditched "have it your way" as a slogan doesn't mean you have to! Once diagnosed, living with Common Variable Immunodeficiency (CVID) requires lifetime infusion treatment. The pillar of treatment…
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