Hello and welcome!

How are you today?

Leslie Ann

http://www.naaf.org/site/PageServer?pagename=2014Conferencepageholder

NAAF Conference

I 1st found out from my primary Dr as I showed her the blister like bumps I was getting. I thought it was acne or  psoriasis. She told it was serious and my scalp was already scarred.  The dermatologist did a biopsy and started treatment. I then waited almost 2 years to see a top specialist in the  for scalp disorders. He re-confirmed the diagnosis.  This was before everyone had home computers and the internet was just really starting.  I could not find anyone with info. The specialist was clinical and wouldn't answer questions. He also wanted to put me on medication that could cause problems if you got pregnant.  I stopped seeing him.  I struggled with finding knowledgeable dermatologist for years.  Last year when I attended a support group which I now co-lead was the 1st time I had met anyone else with scarring alopecia and LLP. I  recently cut my hair almost off as I am so tired of trying to hide my spots.  I fix my hair and it looks terrible by the time I get to where I am going.  The short hair is easy to keep and I really don't care if people see my spots any more.  I struggle with what I feel is the lose of the feminine side of my looks but I refuse to let it prevent me from doing things.  I just booked getting my eyebrows tattooed and between the hair lose and no eyebrows, it has aged my looks. The shorter hair helps me look younger.  I also come across stern looking without the eyebrows. Meeting other people going through this has been huge - 25 years alone just sucked.  You really do not get it unless you live it.  My mother in law compared me cutting my hair to Sinead O'Connor, I laughed, she couldn't understand why  the comparison meant nothing to me....