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Living with Fabry disease. How to live with Fabry disease?
Can you be happy living with Fabry disease? What do you have to do to be happy with Fabry disease? Living with Fabry disease can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Fabry disease
For me, it's the acceptance that no amount of explaining will result in people without Fabry Disease understanding. Fabry Disease caused me to have erythromelalgia (burning in my hands, feet and ears/head) and hypohidrosis (I don't sweat enough) and while I have my symptoms under control via diet (***see diet page***) and Galafold (migalastat) and those symptoms are considered mild I go to considerable measures to restore comfort to my life. Below is a list of how I cope with the above problems.
Problem: rashes under my arms from not sweating enough.
Solution: corn starch applied with a makeup powder puff in order to sleep without waking up with a rash. I can wear regular spray/powder deodorant during the day
Problem: overheating while sleeping
Solution: wear loose light clothes, stick my feet out of the covers, lower temperature in the room, sleep in folded silk bed sheet with silk pillow case for head and knee pillow.
Problem: hands drying out while sleeping which causes them to dry out and "trigger" erythromelalgia and inflammation of my knuckles.
Solution: I strap spheric dog toys with little plastic spikes on them to my hands after applying Gold Bond 10-hour night moisturizer. If I just put the moisturizer on my hands the cream would wipe off onto the sheets and my hands would burn in the night waking me in pain. The spherical shape matches my hands natural shape while the spikes create a channel for air to travel thus giving my hands more time to absorb the moisturizer.
Problem: Uncomfortable socks being too tight
Solution: socks for diabetics are very loosely woven.
Problem: Not sweating enough, awake and usually in public, often outdoors
Solution: Spray water bottle. As much as possible I apply and reapply water from a spray bottle to my hands, feet (with sandals on) and head/ears.
Warning: the information provided is anecdotal and has not been evaluated by a doctor. Individual results may vary. Please consult with your physician(s) prior trying any thing mentioned.
Problem: rashes under my arms from not sweating enough.
Solution: corn starch applied with a makeup powder puff in order to sleep without waking up with a rash. I can wear regular spray/powder deodorant during the day
Problem: overheating while sleeping
Solution: wear loose light clothes, stick my feet out of the covers, lower temperature in the room, sleep in folded silk bed sheet with silk pillow case for head and knee pillow.
Problem: hands drying out while sleeping which causes them to dry out and "trigger" erythromelalgia and inflammation of my knuckles.
Solution: I strap spheric dog toys with little plastic spikes on them to my hands after applying Gold Bond 10-hour night moisturizer. If I just put the moisturizer on my hands the cream would wipe off onto the sheets and my hands would burn in the night waking me in pain. The spherical shape matches my hands natural shape while the spikes create a channel for air to travel thus giving my hands more time to absorb the moisturizer.
Problem: Uncomfortable socks being too tight
Solution: socks for diabetics are very loosely woven.
Problem: Not sweating enough, awake and usually in public, often outdoors
Solution: Spray water bottle. As much as possible I apply and reapply water from a spray bottle to my hands, feet (with sandals on) and head/ears.
Warning: the information provided is anecdotal and has not been evaluated by a doctor. Individual results may vary. Please consult with your physician(s) prior trying any thing mentioned.
Posted Jul 1, 2020 by Fabry Father 1100
