Frontal Fibrosing Alopecia | Interview with Rosemary

Interview with Rosemary @when.will.it.stop.falling.out #hairlossawarenessmonth

August is Hair Loss Awareness Month, and in celebration we wanted to reach out to one of our lovely customers Rosemary @when.will.it.stop.falling.out who is sharing her alopecia and hair loss experience on social media.

1. WHEN DID YOU START EXPERIENCING HAIR LOSS?

I started with hair loss in 2016, I thought it was a fungal infection on my forehead as it was really sore and inflamed, I never ever suspected alopecia because I thought alopecia was just due to being stressed, I was very uneducated and naive.

After a few years another bald patch appeared above my ear and I decided I needed to see my doctor but this wasn't until 2020 because I kept thinking it would get better by using lots of different creams etc..

2. HOW DID YOU GO ABOUT GETTING A DIAGNOSIS?

I went to my GP who took a blood sample, it came back normal so she referred me through to the local dermatologist.

She diagnosed me with frontal fibrosing alopecia (FFA) in 2020 but early this year (2022) we decided together to do a biopsy on the side of my head due to the pattern of hair loss I have. The results came back that I also have Alopecia Areata (AA).

3. CAN YOU TELL US A BIT MORE ABOUT FRONTAL FIBROSING ALOPECIA (FFA)?

Frontal Fibrosing Alopecia is a form of scarring hair loss affecting the hair margin on the front of the scalp. This happens due to inflammation and destruction of the hair follicles. There may also be hair loss from the scalp near the ears and also from the eyebrows. Sometimes hair loss can also occur from other parts of the body, but this is less common.

4. WHAT MADE YOU DECIDE TO START SHARING YOUR EXPERIENCES ONLINE?

I felt so alone with my diagnosis in 2020, I cried so much! One day I googled frontal fibrosing alopecia blogs and someone mentioned Facebook pages and then I thought about Instagram. I could only find one other lady with FFA so I messaged her. It was amazing to talk to someone who understood how I was feeling. I decided to create my own account @when.will.it.stop.falling.out

It has helped me so much with my acceptance of my hair loss.

5. WHATS BEEN THE REACTION TO YOU SHARING PHOTOS OF YOUR HAIRLOSS ONLINE?

I have only ever had positive reactions to posting photos and videos online. I get messages from people who are private about their hair loss telling me I'm brave and thanking me for posting photos. It means a lot to me that me sharing photos is making a few people feel less alone.

6. WHAT HAS HELPED YOU ACCEPT YOUR HAIR LOSS?

Time, and knowing I'm not alone anymore. Having my Instagram account has definitely been a massive support for me. I used to hate my bald patches but now I don't hate them, yes I would love to have my hair back but then this is me now. I have alopecia, it's part of who I am now.

7. WHY HAVE YOU FELT ITS IMPORTANT TO SPREAD AWARENESS ABOUT FFA?

I want to educate people and make people feel less alone in their hair loss journey.

I hope my account is helping spread awareness for frontal fibrosing alopecia. I certainly didn't know there were so many different types of alopecia/hair loss.

8. ARE THERE ANY STYLING TIPS THAT YOU’VE FOUND HELPFUL?

I have used the Boost N Blend RootZ powder which is really helpful to cover up the white bald patches on the side of my head.

I tried a fringe/bangs but it irritated me but it did help cover the bald patches across my forehead.

I have recently ordered a custom wig from @Glückssträhnen Haarteile. I'm so excited to get it, I won't be wearing the wig every day but I will wear the wig on days I feel self conscious.

9. FOR ANY WOMEN EXPERIENCING HAIR LOSS FOR THE FIRST TIME, WHAT IS THE ONE PIECE OF ADVICE YOU’D GIVE?

Talk about it, open up to your friends or family. They may not understand and they may say the wrong thing but hiding it like it's a secret isn't good for you. If you can't talk to your friends or family reach out to someone online in the hair loss community.