Cicatrical Alopecia is life-changing but it is not life-threatening. The earlier one gets treatment the better the prognosis
My mother had been a hairdresser for many years, so growing up she always looked after my hair, it was always beautiful. When I became an adult my hair was my crowning glory so to speak. It was fine but I had a lot of it. In the mid 90s I developed oral lichen planus, initially I thought I had eaten something with MSG, but five doctors and a biopsy later – I was diagnosed.
About five years after that I started losing my hair more than normal and I got scared. I went to my doctor who sent me to OHSU (Oregon health and science university), where I saw Dr Roberts who took a biopsy and diagnosed me with lichen planopilaris. I told her I was scared and didn’t want to go bald – she assured me I wouldn’t go totally bald. She said the disease kills the hair follicles but it’s never a total loss. I was devastated, bad enough I had this in my mouth (it went into remission after 7 years), and now I faced having bald patches and thinning hair.
The thinning continued slowly but the devastation never left me. I tried Minoxidil but it didn’t really help. For the past several years I’ve used XFusion and Topix after washing my hair and it hides the thin areas which are on the crown. It gives me slightly darker roots so it looks natural. I usually wear my hair up and I tease it on top to make it look thick … no-one knows I have this problem except my close friends.
