Rare Disesae: Happy rare disease day!

It might seem weird to wish someone a happy rare disease day but I am chronically ill with a rare disease. And that is why I know how important it is to create awareness for all kinds of (rare) diseases and chronic illnesses.

 

I have been chronically ill with a rare disease for over 10 years, I am 1 in a 1.000.000 and I have CAPS disease. 

 

In the past recent months I have started to share more about myself, about my rare disease but never wrote down the words I have CAPS and in honour of rare disease day 2021, I felt it was time to just do so. CAPS is short for Cryopyrin-associated periodic syndrome which is an overarching name for multiple diseases. I'll probably write another blog about what CAPS is and all soon but for now, it is enough. I just know that it can be very difficult when you have are rare disease to find like-minded people and therefore I wanted to just put it out there and to let you, someone know that if you are that person with a rare disease; 

 

You are not alone, together we are many.

x Poppy