I can remember the feeling the moment my life changed in May 2025.  I walked into Isaac Qureshi's True Crowns exhibition in Stoke Newington feeling like a failure in life because I had lost almost half of my hair to frontal fibrosing alopecia (FFA).  There was such a buzz in the room and loads of absolutely beautiful vibrant bald women (some men as well but it was the women I really noticed).  My close friends and family had always said that I looked fabulous, but they had to say that, didn’t they?  They probably didn’t mean it; they were just being nice to me.

I was almost instantly surrounded by strangers telling me that they loved my picture and, in some cases, that they also loved the rest of my house! At that point I hadn’t even seen my picture on the wall.

My marriage ended in 2014.  I had very short cropped hair that I wore bleached white.  It was very striking and I loved it. Over time my hairline seemed to be receding a little but very slowly and my hair was so short it was difficult to tell so I didn’t worry about it. In any case the hairdresser would have said something if there was a problem, wouldn’t she?

At some stage that I can’t really remember, I lost the hair over my ears. I was stressed – I was still living in the family home with my twins who by now had taken both their GCSEs and their A levels. My daughter’s car had been written off in a collision with a motorcyclist and his insurance company was pursuing her for a personal injury claim of £50k in the first instance.  There was a lot going on. I truly thought that if I dealt with the source of the stress my hair would grow back and everything would be ok. At this stage I asked for my thyroid to be checked when having my annual “do I have diabetes yet?” blood test and it was “fine”. Regarding the type 2 diabetes, I didn’t have it then but I sure do now.

I grew out the bleach, parted my hair lower and lower and used the remaining hair to cover the bald area. Meanwhile there was a global pandemic and I was regularly reminded, by text message, not to contact my local GP surgery as they were not seeing patients. Life carried on, only with gradually less hair.  Eventually a good friend told me she had been watching television and someone had steroid injections for their hair loss. Perhaps I could look into them? As it still didn’t feel bad enough to bother the NHS, I found a local trichologist and booked an appointment. She took one look at me and said that she would be unable to help as she was pretty certain I had FFA and I needed to see a good dermatologist. She gave my details to the secretary of Dr Woo in Northampton and I was seen pretty quickly for an initial consultation.  As I don’t have private health cover she referred me back to the NHS and in February 2023, after a scalp biopsy, I was diagnosed with FFA.

I am on hydroxychloroquine to slow down the progress of this autoimmune condition.  I need regular blood tests to check my liver function and retina scans twice a year to check for any damage.  These are the potential side effects of the medication, which I have to assume are better than the possible effects of letting my immune system destroy all the remaining hair follicles before possibly turning to another part of my body.

Unfortunately I have had other medical issues over the last couple of years alongside my FFA – hearing loss and tinnitus in my right ear, type 2 diabetes, a year of worry about changed cells on my cervix, to name but a few.  I have felt a failure, unattractive, invisible, alone, worthless.  Hair is such a big deal in Western society.

BUT connecting with the alopecia community, meeting other fabulous women (and men) at Isaac’s exhibition, talking openly about my condition and how it makes me feel has made such a difference. I am really looking forward to Alopecia UK's Big Weekend event in Birmingham at the end of September. I am on the 'Alopecia My Way' panel and I hope that by sharing my story and my experience I might be able to make a difference to somebody else.