12 minutes of Inspiration
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…
Continue Reading
12 minutes of Inspiration
5 Remarkable People Diagnosed with AS You Didn’t know
1. Leonard Trask Trask suffered a terrible horse riding incident in his 20s that led to immobility and deformation of his spine. He committed his life to finding a cure…
Continue Reading
5 Remarkable People Diagnosed with AS You Didn’t know
Source: Photo illustration by Justin Thomas, William & Mary News
Good Bacteria? Yep… Mmmm Yogurt!
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…
Continue Reading
Good Bacteria? Yep… Mmmm Yogurt!
5 Questions you’re tired of hearing when you have CVID
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. “…
Continue Reading
5 Questions you’re tired of hearing when you have CVID
The Zebra painting is sold, but appropriate since those with rare diseases refer to themselves as Zebras after this common saying in the medical community.
"When you hear hoofbeats think horses...not zebras."
CVID Artist Paints for Awareness
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…
Continue Reading
CVID Artist Paints for Awareness
A flashmob broke out during the 2014 Walk. Source: Facebook
Limited in Childhood, Watch Her Be Extraordinary Anyway
Your average American probably thinks of middle-aged adults or the elderly when they hear the word arthritis. The sad thing is you really can't blame them. Take this commercial from…
Continue Reading
Limited in Childhood, Watch Her Be Extraordinary Anyway
10 Shocking Things Cheaper Than Your HAE Drugs
In a recent study published by Prime Therapeutics, the company reported that the annual cost of treatment to an HAE patient is over $300,000. We wanted to illustrate the ridiculous…
Continue Reading
10 Shocking Things Cheaper Than Your HAE Drugs
Still no diagnosis? Could Watson be the answer?
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…
Continue Reading
Still no diagnosis? Could Watson be the answer?
shutterstock
NOMID: a.k.a. CINCA
No, not cinco. "CINCA"! CINCA stands for chronic infantile neurological cutaneous articular syndrome. NOMID stands for Neonatal Onset Multisystem Inflammatory Disease. So is CINCA really the same thing as NOMID?…
Continue Reading
NOMID: a.k.a. CINCA
Pfizer Bids For Swedish Maker of Treatment for NOMID
Looks like Pfizer wants to buy a Swedish company who provides a treatment for neonatal-onset multisystem inflammatory disease, (NOMID). NOMID belongs to a family of conditions known as Cryopyrin-Associated Periodic…
Continue Reading
Pfizer Bids For Swedish Maker of Treatment for NOMID
Doctor Said Crazy, Her Willpower Knew Better
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…
Continue Reading
Doctor Said Crazy, Her Willpower Knew Better
“Have it your way” – your CVID treatment
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…
Continue Reading
“Have it your way” – your CVID treatment
5 Hilarious Tweets From Ankylosing Spondylitis Patients You Can Relate To
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…
Continue Reading
5 Hilarious Tweets From Ankylosing Spondylitis Patients You Can Relate To
Big Pharma Neglected Them. This HAE Team Gave Them Hope
In the famous film adaption of the musical, Cabaret, Sally Bowles and the Master of Ceremonies perform the famous lines "Money Makes the World Go Round." Although its obvious in…
Continue Reading
Big Pharma Neglected Them. This HAE Team Gave Them Hope
