When you have a rare disease like chronic granulomatous disease (CGD) and have spent the better part of your life being poked and prodded by (hopefully) well-meaning doctors, it’s easy to feel…
Anyone diagnosed with a chronic illness has two choices. Option 1: Accept it, live life idly, and wait to meet your maker. OR Option 2: Accept it, learn what the…
A team of researchers from across the globe have discovered a previously unknown genetic immunodeficiency by analyzing five families at Boston Children's Hospital. The condition is linked to a mutation…
Scientists Make Key Discovery in Rare Disease Category A gene that may play a role in solving the mysteries of autoimmune diseases such as type 1 diabetes, rheumatoid arthritis, and…
Blogger Zebra’s Child, who has common variable immune deficiency, recently posted about the struggle she finds staring herself in the face first thing in the morning. While looking in the…
Sometimes we want things to be explained to us in a way we can relate to. Mother of two and Common Variable Immune Deficiency (CVID) Blogger on "Through Accepting Limits"…
Vanessa Garrett, a woman with Crohn’s disease, common variable immunodeficiency (CVID), and Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), is grateful for her life despite her circumstances. Her family is…
Ordinary Mom Delivers Extraordinary Gift of Life BROOKWATER, Australia. Corinne Heapy, a devoted mother of two, knows firsthand, what it’s like to give the gift of life. She’s heroically…
Erin can't recall a time in her life when she wasn't sick. Since the age of four, she has had an endless succession of infections, sinusitis, bronchitis, urinary tract infections,…
Julia Domenick has spent nearly five years caring for her husband Andrew "Drew" after he suddenly became ill. "Drew just had his 50th birthday in rehab! We never thought that he…
Meet TZ the IDF Zebra! We told you this year’s conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra…
We told you why this year's conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra Exciting. Find out…
The IDF's 2015 National Conference is quickly approaching! For 3 days, Louisiana will welcome the IDF and all of its constituents and supporters. From Thursday, June 25th- Saturday 27th, the IDF…
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…
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…
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