Meme Monday: Monday Motivation and Some Laughs for CAPS Families
During the Holiday Season, we take time every year to express what we are thankful for. Usually this includes, friends, family, food on our tables, and a roof over our…
During the Holiday Season, we take time every year to express what we are thankful for. Usually this includes, friends, family, food on our tables, and a roof over our…
Meme Monday has been taken over by some of the most treacherous monsters of Halloween and Hollywood lore. All week we are profiling each monster that has tied us all…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
Aaron is a twenty-four year old college graduate living in Alabama. He’s an entrepreneur who majored in small business management. His father is a pastor and he has three siblings.…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
Not long ago, I read an article about a heroic father’s quest to fight injustice for his son who is living with a rare genetic autoimmune disease called familial cold…
Everyone loves a little mystery, except when it comes to ominous types of autoimmune diseases. In an article from Rare Connect, a website that connects rare disease patients globally, a…
I'm sick as hell and I don't wanna take it anymore! Won't somebody please diagnose me?! Over at RareConnect, a man named Blair writes about his symptoms: hearing loss, hives, joint…
So, let’s say you’ve lived most of your life with a bucket of symptoms you’ve never understood, and that doctors have never been able to diagnose. Symptoms like joint pain,…
For anyone suffering from chronic pain, you know what it’s like. If you haven’t had that luxury, here’s what it feels like: You feel like Frankenstein. Your friends and family…
After a great week of telling the honest stories of people living with invisible illnesses for invisible illness awareness week, we want to focus this Meme Monday on a group…
Ever heard of CAPS? It’s not a hat or a Washington D.C. based hockey team; it’s a group of rare, inherited autoinflammatory diseases. CAPS, short for Cryopyrin-Associated Periodic Syndromes, is…
Muckle-Wells Syndrome (MWS) It's rare. It's real. It's ready to cause undue inflammation throughout one's whole body with symptoms such as fever, arthritis, and malaise. This genetic disease posed a…
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?…
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…