This website is intended for audiences outside the United States.


Anita’s Story

Fabry disease means life can be tough for Anita, but with the support of her husband, doctors and other Fabry patients, Anita has learnt to accept life with this rare disease.

Get news, stories and updates straight to your inbox

I’m Anita. My husband is my rock.

Support is everything in tough times, as Anita knows better than most. She has experienced Fabry-related pains all her life and been through a lot. But her compassionate, caring husband helps her to accept and live with the disease.

I’m a 74-year-old housewife and have suffered almost my entire life from Fabry-related pains, although I wasn’t diagnosed until 1980. As a child I was unable to play like other children. I couldn’t take ballet classes, go on bike rides or participate in any sports because of the pains, which were a constant companion. They often took the form of stinging in my hands and feet. As I was unable to participate in games or sports I didn’t have many friends. I was often frozen out and as I developed into a teenager I began to feel even more isolated.

Fabry Stories - Anita

Trying to lead a normal family life

When I married at the age of 21, I always complained to my husband about the pain. Sometimes I took up to eight analgesics a day. But it wasn’t only the pain complaints that weighed our relationship down, it was also the endless hospital stays, which sometimes lasted up to six months. Fabry really got in the way of family life.

Our son was born when I was 22. Although he also suffered from Fabry-type symptoms, he grew up without any problems. He was a good student and successfully finished secondary school. When I was older, and finally got diagnosed with Fabry disease, it was suspected that my son also had it. Unfortunately, his diagnosis was also confirmed.

The disease progressed very rapidly in my son. Then, after several strokes, he died. I wouldn’t have been able to cope with this difficult time without the support of my husband. I’m very lucky and proud to have had a husband who was always by my side and supported me in everything I did.

“I’m very lucky and proud to have had a husband who was always by my side.”

Anita's Fabry Story



Moving forward with great support

Since 2001 I have been receiving therapy which has had a positive impact on my life. Since 2009 I have had home therapy too. A nurse comes to my home every day at 2pm and starts the infusion. She stays until it ends. I can’t manage without this now. The nurses are exceptionally well trained.

I have learned to accept the disease and live with it. The Fabry disease self-help group Morbus Fabry Selbsthilfegruppe e.V. (MFSH) has been a great help. Having constant exchanges with other Fabry patients and doctors really support us.

There’s lots more to tell you about Anita’s condition:

Learn more about Fabry disease

Name: Anita

Living with: Fabry disease


First signs & symptoms: Anita has experienced Fabry-related pains her entire life.

Diagnosed: Anita was diagnosed in adulthood.

To learn more about Anita’s rare disease, please visit:

Related articles


I have learned to accept the disease and live with it.

Anita's Fabry Story



Have you got a story?

Everyone living with a rare disease has a story to tell. Whether it affects you directly or you’re a friend, colleague, family member or healthcare professional, we all have our own challenges and ways with dealing with them.

Tell us your story

Rare Diseases Newsletter

Get news, stories and updates straight to your inbox