Han has
Fabry disease

A rare genetic disorder making him intolerant to heat
Too often, symptoms like these go unrecognised and misdiagnosed.

LEARN ABOUT SYMPTOMS

Fabry disease symptoms

Psychological problems

Such as depression and anxiety

Psychological problems

Intolerance to heat & cold

Very sensitive to hot/cold temperatures. Feeling of overheating/freezing

Intolerance to heat & cold

Burning in hands and feet

Numbness, tingling, burning or pain in the hands or feet

Burning in hands and feet

Hearing problems

Such as hearing loss and ringing in ears

Hearing problems

Pain

Episodes of severe pain and burning

Pain

Feeling dizzy

Vertigo with nausea and dizziness

Feeling dizzy

Vision problems

Such as cloudy vision

Vision problems

Kidney problems

Such as progressive kidney damage

Kidney problems

Heart problems

Such as enlargement of the heart, irregular heartbeat or heart failure

Heart problems

GI symptoms

Such as diarrhea, abdominal cramping, frequent bowel movements, flatulence, nausea, and vomiting

GI symptoms

Feeling tired

Tiredness that is not relieved by rest or sleep

Feeling tired

Sweating abnormalities

Such as sweating less/more than normal or not sweating at all

Sweating abnormalities

Intolerance to heat & cold

Very sensitive to hot/cold temperatures. Feeling of overheating/freezing

Intolerance to heat & cold

Sweating abnormalities

Such as sweating less/more than normal or not sweating at all

Sweating abnormalities

Burning in hands and feet

Numbness, tingling, burning or pain in the hands or feet

Burning in hands and feet

Skin rash

Small dark red/purple spots located between the belly button and the knees

Skin rash

Hearing problems

Such as hearing loss and ringing in ears

Hearing problems

Pain

Episodes of severe pain and burning

Pain

Feeling dizzy

Vertigo with nausea and dizziness

Feeling dizzy

Vision problems

Such as cloudy vision

Vision problems

Kidney problems

Such as progressive kidney damage

Kidney problems

Heart problems

Such as enlargement of the heart, irregular heartbeat or heart failure

Heart problems

GI symptoms

Such as diarrhea, abdominal cramping, frequent bowel movements, flatulence, nausea, and vomiting

GI symptoms

Feeling tired

Tiredness that is not relieved by rest or sleep

Feeling tired

Psychological problems

Such as depression and anxiety

Psychological problems

Sounds familiar?

Do you think you or your relative might suffer from Fabry disease?
Contact a physician or your local Fabry organisation.

FIND YOUR LOCAL FABRY ORGANISATION

Cool Down Stories

Warm days and physical activity can be challenging for people with Fabry disease. Since intolerance to heat is a common symptom, finding alternative ways of cooling down the body is crucial.

Read the stories of people in the Fabry community and find out how they cool down.

Cho Jungho

South Korea

In summer, I wear a very thin windbreaker or shirt to prevent sunlight from directly touching the skin because I don't sweat.

David

United Kingdom

All of our childhood holidays ended up being based around water…. and still are. I could never run, cycle, even stay out in the sun … but get your kids into dinghy sailing, surfing, swimming etc. to cool them off with spray. We quickly found that electric fans are good, but only if you can sweat (look up “cooling by evaporation”!) If not, you need a fan AND a water spray. Good luck

Slay Doh

Australia

Taking off my t-shirt, rinsing it under water then ringing it out and putting it back on helps for an hour or so. Especially in the extreme summers of Australia. A spray bottle with cool water with the setting on mist cools my head down.

Your story helps parents to recognise Fabry symptoms.

Thank you for sharing your story!
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Find help

Get informed and get checked in your area.
Consult the map to find your local patient organisation or use the form to contact them directly. If you think you or your relative might suffer from Fabry disease, always consult a doctor.

1 in 10 people with Fabry is unaware of their condition.

Contact your local Fabry organisation

If diagnosed early, Fabry symptoms can be managed and reduced.

Send your questions about Fabry directly to a patient organisation in your country.
Always consult a doctor for medical advice.

Thanks for your question. Your local organisation will get back to you as soon as possible.
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