When you have Fabry disease, it’s hard to predict how your condition will change over a long time. Its effects can vary widely from person to person. That’s especially true for women.
But we know two things for sure. Treatment can improve your symptoms so you feel better day to day. And men and women with Fabry disease are living longer and healthier lives than ever before.
Fabry Disease Prognosis
This condition is progressive, meaning it gets worse over time. This may happen slowly. Men usually have serious medical problems starting around ages 30 to 45. For women, complications may not show up until your 50s or much later.
Symptoms of classical, or type 1, Fabry disease usually appear in infancy or childhood, though in late-onset Fabry (type 2), symptoms can begin in adulthood and be less severe. Children with Fabry do well with proper medical care.
Late-onset Fabry disease doesn’t cause symptoms in childhood. Your doctor might notice heart or kidney problems starting in your 30s.
Complications as You Age
When you get older, Fabry disease can lead to life-threatening complications, including heart disease, stroke, kidney disease, and kidney failure. These problems are usually milder in women than in men regardless of the type of Fabry disease. But some women can have severe symptoms, too. Both sexes may have:
- An enlarged heart
- Heart valve problems
- Irregular heartbeat
- Heart attacks
- Strokes or transient ischemic attacks (TIAs, or “mini strokes”)
- Kidney disease or kidney failure.
Fabry disease can damage your kidneys. You may be able to manage kidney disease with diet and medication. But if you have kidney failure, you’ll likely need dialysis or a kidney transplant.
Many people with Fabry disease live full and productive lives. But men in particular don’t live as long as normal. The reason is usually heart disease or kidney disease.
If your doctor finds and treats these problems early, it may help lengthen your lifespan.
It’s normal to feel anxious about your future health or worry that you might pass the disease to your children.
Connecting with others who have Fabry disease may help you feel less alone. Your doctor can put you in touch with a support group. Or you can contact the Fabry International Network.