Hello, I'm Rosemary, I'm 35 years old and was diagnosed with Frontal Fibrosing Alopecia (FFA) in 2020.

*Frontal Fibrosing Alopecia is a type of scarring hair loss that affects the frontal region of the scalp (i.e. the forehead and sideburns). The hair follicles are destroyed and turned into scar tissue, resulting in permanent hair loss in the affected areas. 

My hair loss started in 2016. I first noticed a red patch on my forehead which turned into more red spots that were sore and sensitive. I tried lots of lotions and potions but nothing worked.

At one point I thought it was a fungal infection. I ended up with a dent in my hairline and a noticeable bald spot on my sideburn. As a busy mother of two, I kept procrastinating about seeing a doctor, thinking my hair would grow back, but when it started getting worse I decided to do something about it.

My local GP thought it could be lupus and ordered blood tests. These came back normal, so I was referred to a dermatologist, who confirmed it was FFA.

My first appointment with the dermatologist was actually quite upsetting as she didn't beat around the bush about my condition. I was told my hair would never grow back and not to waste money on a hair transplant which would probably not work due to the damaged skin.

I came out of the appointment and cried all the way home because I had never heard of frontal fibrosing alopecia before. When I got back home and composed myself I googled FFA and immediately started crying again because, what I saw, scared me. The photos were very clinical looking and really worried me.

It has been an emotional rollercoaster since my hair loss started and especially since my diagnosis. I have had to grieve my hair because when you know that your hair will never come back it's quite a raw emotion.

I spent nearly a year from my diagnosis date getting really depressed about my hair loss and would spend so much time looking in a mirror, crying and hating what I saw. My bald patches are so white and smooth and I hated to touch them. After getting so upset day after day I wanted to try and find something about FFA online so in September 2021 I went searching for blogs or articles about FFA and found one that mentioned a Facebook group! Why had I never thought of that before?
I joined a couple of support groups, including Alopecia UK's private Facebook group, and I introduced myself with photos of my hair loss. I was blown away by the replies I was getting, all saying that theirs looked the same. I felt like I wasn't alone anymore and it put a smile on my face.

In October 2021, I tried to find other people with FFA on Instagram with hair loss accounts but only came across one, her name is Ashley and she's from Australia (@thehairloss_mumma). She had over 1000 followers and I thought she wouldn't message me back but I sent her a message to reach out to her. To my shock/delight she messaged me back and we chatted about FFA and our experiences, it was so lovely.

After realising there wasn't another FFA account I thought I would set up a page to show photos of my hair loss so hopefully it would help others. I was racking my brains trying to think of a good username and I came up with @when.will.it.stop.falling.out because with this condition you don't know if it will stay as it is or will progress further back.

At first I was still very upset about my hair loss but honestly since having the account and sharing my photos I have accepted my hair loss now. I will still have bad days and cry but on the whole I realise that I can't do anything to make my hair grow back and now I want to get the word out about FFA.

I'm not full of knowledge on this condition but I'm there for anyone who wants to talk about their experiences with FFA so please feel free to message me on my Instagram account @when.will.it.stop.falling.out

UPDATE: Rosemary has set up an email address [email protected] for anyone who isn't on Instagram and wants to email me privately.