Hi, I've been a longtime lurker, but this is my first post. The discussions here have been incredibly helpful so far, so thanks to all! Unfortunately, I've been diagnosed with LPP and/or FFA at the young age of 31. I believe that I first noticed my pink inflamed scalp around 1.5 years ago. It first occurred during a period of very extreme chronic stress, perhaps the worst time of my life -- so I believe that it was triggered by emotional stress.

So far, I have only lost a small patch of baby hairs at the front of my hairline (approximately 0.5-1 cm deep, 1-1.5 inches wide) -- I noticed the loss only because the baby hairs at the very front of the hairline have remained intact, so I have a weird little bald patch. My 'actual' hairline where my long hairs begin is still intact. The patch is sometimes pink, and the hairs along the margin have a bit of perifollicular redness, but there's no pain or itching. Fortunately (I suppose), I have not lost any eyebrow hair or body hair, and the rest of my hairline is unchanged. Right now, I can hide the patch by parting my hair to the side.

My original dermatologist diagnosed scarring alopecia (LPP) but didn't distinguish between LPP and FFA. I subsequently saw a hair specialist who diagnosed FFA based on the location of the loss and the clinical presentation, all without biopsy. The hair specialist derm put me on a low dose of CellCept (250mg twice daily), along with steroid injections and clobetasol/tacrolimus topicals. I've been using the LaserComb 3x/week, and I am starting a series of Excimer laser treatments next week. I also started using Latisse on my eyebrows and eyelashes as a preventive measure.

A few questions for you guys:

(1) I know that many FFA patients take some sort of anti-androgen (finasteride, etc.), which seems to be a decently successful treatment. Since most women with FFA are post-menopausal, I was worried that I had some sort of hormonal imbalance given my age, so I did an extensive hormonal panel -- aside from high SHBG, everything looked normal, and my testosterone (total and free) were on the low end of normal. For those on anti-androgens, did any of you actually have elevated testosterone or DHEA? I would probably not go on finasteride given my age, but I might try spironolactone if there's a potential benefit.

(2) Have any of you tried platelet rich plasma (PRP) therapy? My derm mentioned it to me -- he said that there is a very, very slim chance that it would help with regrowth, but that it might help to halt any further loss if other treatments don't seem to be helping. He did have a patient with CCCA who requested the treatment and had complete regrowth, but I am not holding my breath. He'd give me a discount, and I'm in a fortunate situation where the cost wouldn't be a deterrent. 

(3) Aside from medical treatments, what other lifestyle changes have you made? Supplement-wise, I'm taking Viviscal, iron, vit C, vit D, zinc, methylfolate, krill oil, ubiquinol, and turmeric. I've been eating a strict autoimmune paleo diet, I exercise regularly, and I meditate and go to restorative yoga classes.

(4) Are there any questions that any of YOU have about the current state of the medical research on FFA? I am a PhD biomedical researcher, so I have full access to all journal articles, and I can provide summaries/interpretations for anyone who is interested. I will say that I've done an extensive PubMed review, and having looked at the body of research, I am not impressed with the quality...

Sorry for the long post! I was quite depressed about the diagnosis at first, but I've already made a ton of positive life changes -- so maybe it's a blessing in disguise. 

Last thing (I promise), I've read several posts that have mentioned that celebrities don't seem to get it. I don't think that is true -- they might just be better at hiding it! For example, former Fly Girl Marie Todd posted about her FFA (http://www.marietodd.com/blog/), and Grace Coddington (creative director at Vogue -- https://en.wikipedia.org/wiki/Grace_Coddington) likely has FFA, but it doesn't seem to bother her one bit.