Comment

Comment by Meme on March 4, 2014 at 11:57am

Welcome to the group Anne. I have only been a member myself for about a month but these ladies have been very supportive and have given me so much information to think about.  I have had FFA for over 10 years now but was not diagnosed until 2 weeks ago by Dr Chris at Guy’s hospital.

I believe my FFA is hereditary from my father’s side of the family.  But who knows. I know this must come as a blow to you; especially after all you have been through. My FFA is a always there as a constant reminder, but my thinking is that if I have to have a medical problem then at least I haven’t got one that causes me to be unwell or in physical pain. Just my way of looking at it and trying to get through it.

Take care.

meme   

Comment by Anne Louise on March 3, 2014 at 10:54pm

I was just diagnosed with FFA last week. I am only 46. I am feeling devastated and overwhelmed. My eyebrows have been vanishing for the past year and the working theory had been that it was due to my thyroid levels. I had papillary thyroid cancer-while pregnant-4 1/2 years ago and needed my thyroid removed. Anyway, like when I was diagnosed with cancer, I find myself wondering how on earth did I get this?!

From what I have read it appears that the cause of FFA is environmental, since it was only first recognized in 1994. My endocrinologist said there have been many more cases in the past 5 years. I wonder if plastics have anything to do with this. They do have estrogenic properties, and FFA is generally post menopausal, so I'm wondering if there is a hormonal environmental impact. This may sound crazy, but I'm wondering if my beloved Keurig is to blame! Very hot water pouring through acidic coffee in those plastic cups...sounds like great potential for leaching to me. They have become ubiquitous in just the past 5 years.

Thank you for this group, I've been reading posts for a while and thought I would now jump into the conversation.

Comment by Liz on March 2, 2014 at 4:27pm

Hi Cathy. I would be interested to know how you get on with Dr Farrant. I've messaged you :o)

x

Comment by Cathy (UK) on March 2, 2014 at 4:01pm

Claire, ive just seen your comment about mycophenolate mofetil.  This is the medication that I have been on since February 2013. I started on a lower dose but was increased to 1g twice daily at my last appointment to give it a last go, I think, before giving up on it.  I have an appointment with my dermatologist, Dr Farrant at Brighton hospital, on Thursday so I will let you know the outcome. Not sure he will continue with it though as my hair is still receding and scalp is very itchy. 

Comment by Maddy, California, U.S. on February 28, 2014 at 1:07pm

Clarie, I'm sorry about your mom. That is also my case. My mom died 18 months ago as well, and it was right after that very stressful year that I had my worst bout with FFA. It sounds like stress is a major trigger for a lot of us.

Comment by claire on February 28, 2014 at 12:47pm

I also work nights in a boarding school and believe that stress is a great trigger for me as well. Things have got so much worse during the last 18 months which coincides with my mother dying and a number of personal matters.

Comment by Caro UK on February 28, 2014 at 10:00am

Jules, it is great news that you have been invitied to the steering group.

I've been reading the recent posts with interest. I wasn't born by C-section. I agree with MJ that stress is a trigger. In my case I believe my immune system is being placed constantly under stress from working nights over a long period. It is my choice to work nights, as without going into any detail, I can cope better with my job which in itself is extremely stressful.  I have a year left before I can retire.

I had weight issues in my teens and twenties and spent years on crash diets. I was never actually overweight but had a poor body image. Managed to conquer my eating problems after children came along and I had them to focus on rather than myself.

I have suffered from IBS for years which seems to be triggered by gluten. I have medication for this but don't need to take it on a regular basis, only when I have a flare-up. Also I have eczema, though fortunately it's mild and controlled by hydrocortisone cream. In the past I have had thinning hair caused by low ferritin levels which were corrected by taking daily ferrograd C. Once my ferritin levels improved, my hair grew back - this was about ten years ago. Then 18 months ago I developed FFA. Like Sally I am trying to stay possitive, enjoy my life, not get too obsessed about my hair loss, eat healthily and exercise as much as I can. When I want to look nice I can wear my wig and feel better about myself.

Comment by Jules UK on February 28, 2014 at 8:51am

The steering group is a new initiative ie. it hasn't yet met! Dr Harries asked whether I'd like to represent FFA since I'd mentioned this forum. Right place, right time perhaps, I don't know why he asked me particularly. The group will be a consortium of clinicians and patients who treat alopecia in all it's forms in the hope of pooling information and securing funding. The first meeting is scheduled for the last week in April in London. Exact time and venue still to be confirmed.
Don't worry, just as soon as I know what is wanted from us, I'll get straight onto the forum for contributions!!

Comment by MJ on February 28, 2014 at 7:19am

Jules, what is the steering committee you are referring to? I really think that if the many details of our med histories were accumulated, a pattern or commonality would be identified. I firmly believe stress is a trigger. The two bouts of greatest loss for me were on the heals of high stress. When I told my first derm not a hair loss specialist) about my overuse of omeprazole, he gave me a list of drugs responsible for 109 common reaction patterns. Omeprazole was listed under Lichen Planus. Do not know if there is a link between LP and LPP, but I thought this was eyebrow raising. Also, one of the side effects of omeprazole is hair loss.
MJ

Comment by Polly UK on February 28, 2014 at 6:38am

Celia - are you still taking Lymecycline? My scalp feels much better since taking it but I'm worried what will happen when I stop. I've only been prescribed 2 months supply and I will run out soon. My derm said 2 months was the norm but if others take it for longer I could try asking my GP for an extra month.
Hope you all have a good weekend. We saw the NT digital War Horse at our local cinema last night and it was a truly wonderful experience. xx

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