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Alopecia UK
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New Diagnosis

Hello everyone; I'm new here and I'm a 64 year old woman living in Hampshire. I began losing my eyebrows about 7 years ago and within 3 or 4 years they were totally gone, by which time I was starting to lose my hair at the front. My parting was widening, my hairline receding and there was a small pile of hair on the bathroom floor every day.

I was referred to a Consultant Dermatologist who took biopsies about 18 months ago and diagnosed Systemic Lupus Erythamotosus. Since then I have been taking Hydroxychloroquine and applying Synalar gel to the inflamed and thinning patches of my scalp.

My consultant retired a couple of months ago and today I had my first consultation with my new consultant who studied my biopsy results, examined my non-existent eyebrows and my scalp before telling me that I don't have Systemic Lupus Erythematosus but instead have Frontal Fibrosing Alopecia (FFA). She also recommended that I stop taking the Hydroxychloroquine as it would have no effect on FFA.

Regardless of which diagnosis is correct I have to accept that neither my hair nor my eyebrows will return and that in the forseeable future I will continue to lose my hair, although both consultants suggested that the condition may well 'burn itself out'.

So I'm here to find out more about my newly diagnosed condition of which, until today, I had never heard, to be reminded that there are other people with the same condition and to learn how they are dealing with it.

2 Replies

Hallo! I have experienced the same loss of eyebrows and hair receding from the front as you (I am now 62). I wish I had realised that I had FFA years ago as I have recently been advised to try Nizoral 2% to reduce inflammation and itching of the scalp. This has definitely slowed down the hair loss. As it leaves hair very dry, I am on the lookout for a tea tree conditioner or similar which does not have irritants on the ingredients list. Suggestions very welcome (NZ based). I wind a cotton scarf round my head around my very receded hairline and am hoping not to have to wear a wig as that might be uncomfortable long term. I find that moving my scalp gently to massage it also seems to help. I would like to reach out to people who have FFA so that they find out early and are able to try these simple steps straightaway.

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Hiya Susie! I have Alopecia Areata as well, I am 20 years old and have had it the past 5 years. When I was first diagnosed it was only a really small patch, so only being 15 it didn't bother me. Although it gradually spread and I lost 60% of my hair (I was still very lucky that I was able to cover it). Ever since my hair has grew back and fell out in other places, it can be quite hard to find but I have only recently started to use coloured dry shampoo that I spray on my head which really takes the look off of my scalp. I really recommend everyone to do this. I hope it helps but I love hearing of other people having this as its not something spoke about.

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