After I started receiving my enzyme replacement therapy (ERT) infusions I noticed that I was having one mild side effect – my hair and scalp were very dry. My hair was very dry and untamable – it was like straw. I tried all sorts of things to remedy this. I used tea tree oil and hydrocortisone cream on my scalp which only temporality helped and the dryness would come back. I even tried dandruff and dry scalp shampoos which didn’t help – and those things are not cheap and don’t smell all pretty and girly!
Finally, on the advise of my hairdresser I started using a leave-in condition after every shower and a deep conditioning treatment, or “hair mask” once a week. This seems to have done the trick. I still get a dry scalp, but it is not as bad and not constant. And now my hair is shiny and manageable again.
I have heard from a few other Pompe patients who are on ERT and having similar issues, so I thought I’d share with you what I use.
After shampooing and conditioning in the shower I use a leave-in conditioner. I spray it on my towel dried hair and comb it through. Once a week after shampooing I apply a deep conditioning treatment which I leave on for 5-15 minutes and then rinse out. Both these products are “It’s a 10” and can usually be found at your salon or in stores like Ulta. I can now even blow dry my hair, use a styling iron, and/or apply styling product without over drying my hair.