My name is Barbara. I am 58 years old and live in Merseyside. I have Frontal Fibrosing Alopecia (FFA).
I first noticed my hair loss when I was going swimming and couldnít remember the last time I had shaved my legs. This was 4 years ago. On further inspection, I realised that I had no body hair. I then noticed my fringe seemed to be receding and I had little red spots on my scalp.
Initially, I wasnít too worried as I knew that your hair tends to go thinner as you got older and my hair had always been fine with very little body hair anyway.
My GP gave me a steroid gel to apply. He never mentioned alopecia but said for me to go back in 2 weeks. When I went back, he noticed I had lost more hair and referred me to a dermatologist.
When I went to see the dermatologist, she mentioned alopecia and wanted to do a biopsy to determine which type of alopecia I had. She mentioned that it might be androgenetic alopecia, sometimes referred to as male or female pattern baldness. When I went back for the result, I was told it was Frontal Fibrosing Alopecia (FFA) and she would try me on anti-malaria medication to see if that helped. I had been on that previously when I had been diagnosed with Fibromyalgia so wasnít keen to go back on it but I did for about 6 months but as it had no effect I stopped taking it.
I was told that I couldnít have NHS wigs and that I would have to find a way to cope by wearing hats or buying my own wigs.
My FFA diagnosis has meant Iíve experienced a gradual loss. When the follicles become inflamed and itchy, I know I will lose some more hair. From my front hairline my hair has receded about 6cm, from ear to ear, over the four years since my diagnosis. The rest of my hair is also much thinner and you can now see my scalp. I may have androgenetic alopecia as well as FFA, as Iíve learnt that itís possible to have more than one type of alopecia at one time.
Up until recently I had managed to cover my bald patch by working with my hairdresser to find a style to cover it. But unfortunately the patch is now so big that I can no longer do that so now keep my head covered but find this can be uncomfortable, especially when on holiday. I am ok with close family and friends knowing and seeing my hair but I am always conscious of people seeing me during the day with a cap and then suddenly appearing in the evening with lovely hair. I feel they must realise itís a wig. Iím still getting to grips with my feelings towards wigs.
I decided a long time ago to only worry about the things you can do something about. I cannot do anything about having alopecia. My hair is not going to grow back (FFA means the hair follicles are destroyed permanently, unlike alopecia areata where there is the chance of regrowth) and I have learnt to cope with it in the best way that I can.
My close family and friends are very supportive and they know how far we can joke about it Ė I do feel itís been important to keep a sense of humour about my situation. I do try to make light of it sometimes. I went on a carousel with my grandchildren a few weeks ago and I took a selfie. When showing friends the pictures I said I had visions of my wig flapping up and down in the wind which we all laughed about. As long as I can still have moments like that, I will cope.
I try not to care what other people thing anymore. I tell myself that it could be worse and at least I can cover my head. But having alopecia and talking to others with hair loss has made me realise that not everyone feels the same way as me and I do understand how deeply hair loss can affect us and I do feel their pain.
My advice to anyone struggling with alopecia, of any kind, would be to find a way to reach a level of acceptance. Iíve found that Iíve even been able to have fun, through purchasing wigs in different styles and colours to what I would normally have had. Try not to look in the mirror every day counting hairs. Itís easy to become obsessed and it doesnít help matters. I have found being a part of Alopecia UK a great help as I have gained strength and support from others and this has made my life with alopecia much easier.