It’s time for women with Fabry to be taken seriously
Because no matter your gender, Fabry disease requires consistent monitoring.
IN THE PAST
As recently as 2001, women with a genetic variant (mutation) that causes Fabry were considered by medical professionals to be “asymptomatic” carriers of the disease, meaning they could pass on Fabry without actually having any signs or symptoms.
TODAY
Despite past misconceptions about women with Fabry, we now know that most women who have a variant in the GLA gene do experience the effects of Fabry, often as severely as men who have a variant. Thousands of women around the world have Fabry disease. International Fabry Women’s Day, as recognized by the National Fabry Disease Foundation (NFDF), is the first Saturday in April.
MOVING FORWARD
Because the misconception that women with Fabry are only carriers of the disease has been so prevalent in the medical community, some healthcare professionals may still believe it to be true. But there are resources, including this website, that can help you take charge of your care.
The voices of women with Fabry
These videos can help you gain a deeper understanding of what life is like for women with Fabry disease.