“No one would believe me”: A common feeling for people living with a rare disease (5 October 2021)

Summary

For some, the day we learned of our rare disease diagnosis is a happy day. Odd, isn’t it?

Imagine having your closest friends and family thinking that you are overreacting a bit, or that you are searching for some attention? It might be frustrating!

Having a diagnosis can be very important, not only in order to consider medical needs, but sometimes it can also come as proof that something is happening to the body, proof to others that there is something going on.

Several people across the globe, with different rare diseases, have shared their story, telling us about needing to be heard and understood.