Dermatomyositis
I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this to people nobody has ever even heard of it, even some doctors! Is there anybody out there who can relate to this disease?
I have dermatomyositis. I must wear sunscreen daily. I wear it on cloudy days and reapply every 2 hours. I have the UV index app downloaded on my phone, that index number is important. The lower the index is the better it is for people like us. I try my best to avoid being outside midday when the uv index is highest.
Thank you for sharing about the UV index app.
There seems to be an app for almost everything nowadays!, tagging you so that you'll see your replies 😀 Gina Miller,
RareDisease.net
Team Member
I have dermatomyositis I just use sunscreen and avoid direct long periods of sun
