Discovering I Have A Rare Form Of Alopecia

Diagnoses and grief

I decided to get an allergy test to see whether my diet could be affecting the hair loss. The test came back with some of the usual suspects flagged – yeast, dairy, and cashew nuts among them. So, I started to modify my diet and spent a few miserable months trying to enjoy my life without proper bread, yoghurt and cheese.

When my hair continued to fall out, I asked my doctor to refer me to a dermatologist. At the appointment the specialist got very excited and called a colleague to look at my hair and suggest a cause. They both agreed that it was frontal fibrosing alopecia, a rare condition they had only seen three times before in Bristol. The specialist confirmed that there was no cure, it being a scarring type of alopecia, and that my diet had nothing to do with the condition. Strangely, walking away from the clinic I felt a sense of relief that I could return to my usual diet, the significance of the diagnosis not hitting me until later.

Much later, it happened. My private and business life was in upheaval at this time. The death of my father; my husband who was a recovering alcoholic, was drinking again; and our business was failing. At the same time, I had a routine breast scan and was recalled for a further scan. After my diagnosis with breast cancer in May 2007 and had a radical mastectomy that month. Not too long after my first dose of chemotherapy in July, my hair started to fall out.

My Wig Journey

My first wig was one that I found in the donated wig box at the hospital while receiving chemotherapy. The National Health wigs that I’d been offered were dreadful and this one wasn’t perfect. However I took it to my hairdresser who cut and thinned it for me. It was a short white wig, completely different to my medium-length, dark (but-greying) usual style. Once I’d gotten used to it, I really enjoyed wearing it. I had more compliments than I ever had in my life!

Once my hair started growing back my hairline had receded by about two inches. This made me think about how I was going to manage the condition. I consulted a specialist hair loss clinic and decided on a real hair wig, one that was stuck on by the clinic and that could be washed and dried by the client. However, caring for this was a lot more difficult and time-consuming than I wanted. At the same time, my husband had been diagnosed with lung cancer in 2014 and we were trying to sell our business. All in all, that period was a disaster. I decided to abandon the real hair wigs (which I now realise were not the best quality) and started to look for an alternative.

building Back Confidence

This was when I found Simply Wigs. I bought my first synthetic wig in February 2016, the Zara Mono Lace Deluxe wig in Vintage Snow by Gisela Mayer. My husband died in July 2016 and struggling to deal with the aftermath and complete the sale of our business, I was relieved that finally my hair was the least of my worries. Just to be able to pull the wig on in a morning and know that it looked great was fantastic!

Zara Mono Lace Deluxe wig
Gisela Mayer

I’ve bought many wigs since then and the customer care team at Simply Wigs have been so good at letting me return those that weren’t quite right and suggesting alternatives. I’ll never be totally reconciled with not having my own hair, but other hair problems seem rather common in my family, and I may well have ended up needing a wig without the alopecia.

Flip Mono
Pearl Blonde Rooted

My mother had male pattern baldness and my sister and cousin both have the same thing, my cousin finally deciding to go down the wig route herself. I introduced her to Simply Wigs and, after a self-conscious start, she now loves wearing her new wigs. As do I.
Love, Gillian x