Anonymous. – DL
Cicatrical Alopecia is life-changing but it is not life-threatening. The earlier one gets treatment the better the prognosis
I was diagnosed with possible discoid lupus in 1978 at age 28 from a biopsy of a small reddish brown spot at the inside of my left eyebrow. I was given a cortisone cream to use on spots (nose, lip) as needed. I started using sunscreen and wearing visors or hats whenever in the sun. I never had any lesions or other visual signs of DLE after using the cream and being smarter when in the sun. I was under a large amount of stress at that time.
Fast forward 30 years to 2008 when my husband notices a quarter size bald spot just below the crown on the back of my head. Biopsy result: consistent with discoid lupus. I try hair growth injections for six months with no results.
About the same time, I joined a Kaiser study that showed high amounts of sunscreen elements in my blood/urine samples.
The hair loss continued below the crown, followed closely by total eyebrow, facial, arm, leg and forehead hair loss. I was out in the sun a lot and again feeling very stressed. At this time, I was living in an area where water softeners were needed. It is the only change I can think of.
I tried the usual treatments for the time – Clobetasol, Plaquenil, Doxycycline – and consulted with Dr. Mirmirani at Kaiser Medical Center, Vallejo, CA. Diagnosis was FFA and LPP.
Now: over the last two years, the FFA and LPP seem to have calmed, but there is no regrowth.
In total I have lost two inches of hair all around my face, ears to forehead, and a three to four inch circle in back. I have about a two inch band of hair on top to give me bangs over my forehead and coverage at crown over the area affected by LPP.
I feel blessed to have maintained natural coverage. I’ve tried toppers but have too little hair to anchor them. If hair loss continues, I have a wig I can use, though I find it uncomfortable.
I am now 70, living on the central coast of California, happy as a clam and old enough not to let the hair loss mess with my happiness or enjoyment of life. There are many worse things.
That’s my story.