March 15, 2023

Testimonies through a Rare Disease Day Video

Officially, February 29 is rare disease day as the day is as rare as a rare disease can be….

It’s a day to spread awareness for rare diseases including primary immunodeficiencies (PID), among others. Living with a PID can be a challenge, and something that we have learnt is that every patient experiences their illness in a different way. Some speak up about their illness, while others don’t. Some can function relatively normally; others struggle continuously with infections.

However. it’s not always a negative experience, in some cases, it can bring unexpected joys and lead you down to paths you may not have otherwise explored. For this reason, the Stichting voor Afweerstoornissen (SAS) decided to ask its PID community about the positive things their illnesses may have brought to their lives.

Our Rare Disease Day video is a compilation of some of the responses we received.

“Tiredness is and remains tough, but great to read how others cope”

“Little steps are still steps.”

“Enjoying the days between IV’s and not being sick to the fullest”

“Meeting patients that understand you and don’t require an explanation”

“The recognition was fantastic.”

“I live more intensely and consciously.”

“Share experiences and realising I am not alone.”

“Have met some amazing people via the SAS.”