December 19, 2022

France – New video series with testimonials to improve diagnosis

The IRIS Association has long been committed to improving the diagnosis and medical management of patients with Primary Immune Deficiency. The symptoms of these rare diseases can be quite common, which is why our patients wander a long way: it takes an average of 6 years of illness, doubts and questions before a PID patient gets a diagnosis… 6 years is a long time, too long!

This is why the IRIS Association has created a new series of testimonies “PID & diagnostic wandering”, in order to raise awareness of the rare and unfortunately still unknown diseases that are Primary Immune Deficiencies.

Karine, Suzie and Livia and her family tell us about their long medical wandering, in cross stories with their respective doctors, who were finally able to diagnose and name their diseases.

#1 – Meet Livia: See video

This little girl is here today, surrounded by her parents and big brother because she was able to benefit from expanded newborn screening, those few little drops of blood on the Guthrie test that revealed SCID, Severe Combined Immune Deficiency…

#2 – Karine’s story: See video

This patient is a prime example that test results, which may turn out to be normal despite conflicting clinical signs, are not the only factors that detect SCID, and that consultation with specialized physicians is key to diagnosis…

#3 – Suzie testifies: See video

This patient’s medical wandering came to an end because, despite years of illnesses and a deteriorating health condition, she did not give up trying to find an explanation for her symptoms and asked for a second opinion, thus leading the way for her own diagnosis…

We warmly thank our patients and their doctors, Pr. Claire FIESCHI, Prof. Despina MOSHOUS, Dr. Guillaume LEFEVRE and Dr. Nizar MAHLAOUI for their testimonies.