Good morning. Welcome to the Healing Well Community. My name is Dani and it is very nice to meet you. I hope you find Healing Well to be a wonderful place for support, friendship and knowladge.
I am terribly sorry you have such a debilitating, potentialy fatal, life long illness. I just finished learning about it and I am floored. The amount of pain you experience daily has to be a tremendous struggle. I am so sorry you have to fight so hard just to survive. What concerned me the most was that there is so little that can be done to slow the progression down.
As far as the hair.. I learned about what you have to do to supress the progression and I hate the though of your shaving you head now that you finally have hair for a while. Mostly I would suggest seeing a dermatologist. As far as reactions with the meds.. I recently went to florida and was out in the sun constantly despit the warnings on my medicine. I ended up peeling very quickly and with "hard, flaky, rough" patches at the areas most effected by the sun. I used vitamin E concentraited oil and Aloe mix. It still took about 2 weeks or so to get ridd of the ruff, flaky patches. Here are a few ideas in this article
I dont know if you have any hat shopps where you are.. but perhaps try out some stylish hats and sew a folded bandanna around the inner rim. It will help protect your head, but also keep you from sweating terribly.
I really hope you can find something that works, but that still allows you to enjoy your summer days. Again, it was VERY nice to meet you and I look forward to knowing you better as time goes by. Stay strong!
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood