Yesterday, I had my first appointment with Dr. Olsen at Duke University. My biopsy came back as LPP and she confirmed FFA during the visit. They took photos, measured the hair loss and I was entered in the voluntary clinical research study. 

For the moment the study is just a questionnaire. I haven't started it yet. I plan to sit down and do it over the holiday break. Thanksgiving is this week in the U.S.

The doctor said it will take an hour to complete once I have collected all of the zip codes of everywhere I've lived and all of the names of my beauty products. She said researchers do think the disease has an environmental cause since they are seeing more pre-menopausal women (like me) who have it and also because it only appeared 20 years ago. 

She said she didn't see any visible inflammation on my scalp. I told her I've never had itching, redness or swelling just scaling. I think that is why it has taken so long to diagnose. I first noticed the hair loss three years ago and the first dermatologist I saw said it was alopecia areata. 

I have been taking Plaquenil and was told to stay on it. I was also prescribed Finasteride (5 mg or half a tablet) and I am to alternate between minoxidil 5 percent and tacrolimus ointment (0.1 percent). I was told to stop using clobetasol. 

They also took a bunch of blood for testing. I am to go back in three months. 

I feel a bit numb but trying to stay hopeful. She told me the hair around my bald patches has good density so she thought that was a good sign. For now I am able to cover the bald spots with my own hair and I'll hang on that as long as can. 

Oh, there is one small glimmer of hope. She did say researchers are now thinking regrowth can occur. It's really hard to predict though and it effects everyone differently. She also said early intervention is important and I came a good time to try and save the hair I do have. 

I got a copy of the paperwork I signed to enter the study. It lists the other doctors and clinics that are participating. I can send you all those names if you all are interested.