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, fatigue, headaches, and, worst of all, “cold hives” that flare up in the winter. And, after several years of suffering, you finally get an actual diagnosis.
That’s the good news: You have an answer!
The bad news: It’s something massively obscure called “Familial Cold Autoinflammatory Syndrome (FCAS)”, one of the various types of autoimmune diseases.
Where on Earth do you go when you that diagnosis? Who do you talk to? And where do you even begin?
That’s the dilemma faced by a 34-year-old German man who’s lived with FCAS symptoms all his life. Fortunately, he was able to turn to RareConnect for his FCAS questions.
This joint project between NORD (the National Organization for Rare Diseases) and Eurodis (Rare Diseases Europe) offers patients and families in 78 rare disease categories the opportunity to connect with others just like them to share experiences and insights.
The site also provides informative resources, articles, and FAQs that offer more targeted information than a generic web search can offer. Different patient groups can also sign on to partner with individual disease communities, giving visitors an even broader pool of resources.
Even kids with different types of autoimmune diseases were able to find the site extremely helpful.
In the case of the German patient with FCAS, two members of the community were able to step forward and offer their support. It might not seem like much, but when you feel completely isolated in your diagnosis, every connection can make a huge difference. And because his 8-year-old daughter also has FCAS, those connections have the potential to offer something even greater: Hope for the future.
If you’re living with a rare condition, check out rareconnect.org to see if there’s a community that’s right for you.
If you are living with a type of autoimmune disease and you feel all alone, isn’t it good to know there are others going through the same things and are willing to be your support! Share this article to show that same support to others.
Patient Worthy has no official partnership with rareconnect.org. All comments are solely formed from Patient Worthy and in no way suggests a partnership with NORD or Eurodis.
