Replies to This Discussion

Permalink Reply by MairiM on October 18, 2012 at 7:41pm

This is the store. There are contact details on the page so you could ask for more details of what to ask for in the US. http://www.trendco.co.uk/salons/hove.html

I would also like to know how long one of these would last. And also how it performs in the wind, which is what worries me about my hair just now.

Permalink Reply by Liz on October 19, 2012 at 11:48am

I asked about the wind and she said that if you wear a full headed wig it's better to have no hair. She said that with a hair piece there are options such as grips, combs and a kind of tape which holds it in place without damaging the skin. I said that to have a wig or hair piece blow off in the wind would my idea of a nightmare but she assured me that it wouldn't happen when using one of the above. That's why she said it's better to have no hair with a full wig because a wig is more prone to sliding. So if i get to the stage of being unable to hide but hairloss with a headband I may consider shaving the rest off. Mind you I do make my headbands so I shall make them thicker and thicker before then!

Permalink Reply by MairiM on October 19, 2012 at 12:13pm

This web site does have its moments! I am trying to say thank you to Liz for the information in her latest post, but there's no reply box for her comment. Thanks, Liz.

Permalink Reply by PamW San Diego, CA, USA on October 19, 2012 at 6:22pm

I looked at the website you sent to me Mari, but I can't find info on bespoke. Can you help me find more info?

Permalink Reply by MairiM on October 19, 2012 at 7:57pm

Sorry, I just meant you should contact the shop by email and ask if what they do is universally available or if it is specific to their chain of stores. I found this on their web site : "As part of the global hair loss company Aderans, Trendco supplies top quality products across the UK. We have an extensive mail order customer base, which we supply from our head office in Brighton and through our website."
Managing Director lynne@trendco.co.uk
Sales and Marketing Manager emma@trendco.co.uk

Permalink Reply by Jules UK on October 20, 2012 at 9:42am

Hi everyone. I'm new to this site and just coming to terms with having FFA. So I feel like I've jumped in mid conversation, but there's been so much useful infomation aleady. I was diagnosed yesterday and am feeling pretty despondent, so it's good to see how you are coping with the condition in your different ways. I've discovered that Trendco has a branch in Birmingham, my home city, so will pay them a visit. My hair loss started just pre-menopause with what I thought was excema on the hairline on both sides of my face. Once that cleared with treatment, the hair didn't come back. Then the eyebrows left! And over the past few months my hair has receded in perfect symmetry - on both sides above the ears to about 5 inches. At the mo, there's enough top hair to cover the loss, on calm days at least. I read someone say that they'd rather lose a leg than their hair - that's exactly what I said to my husband. By the way, how do your other halves react / cope? Mine is in denial.

Permalink Reply by Liz on October 20, 2012 at 10:39am

Hi Jules. Welcome to the group. Everyone I have met on here is lovely and supportive. I was diagnosed about a month ago so things are new for me too. Presently I'm obsessed with my hairline and other peoples hairlines as I walk down the street! I have been prescribed oral prednisolone and antibiotic by my doctor for the next 8 weeks to try to stop the loss. My partner has been very supportive and tells me that 'it doesn't really show' or 'it hasn't got worse'. He does say that whatever happens it wont change how he feels about me. He wants desperately to say the right thing but I'm not always convinced that he's not just trying to spare my feelings. My own feelings towards FFA change every day and sometimes every hour. One minute I'm looking at my hair and feeling very sad, (I have lost about 1.5 inches from the front and it's thinning for about another 2 or 3 behind that and I have lost alot over the temples) and the next I think that there are worse things I could have wrong with me. I also think a lot about how things might progress. If I stop losing hair now I can cope with a hairband. If it keeps receding do I really want a wig, or will I have a choice.
xx

Permalink Reply by Jules UK on October 20, 2012 at 11:27am

Thanks, Liz. I thnk I over estimated my receding hairline - 5" and it would be meeting at the back! But that's how it feels. Probably 2 1/2" each side. My forehead hairline is starting to show signs of slight redness at the hair root. I'm scared to look but at nighttime, getting makeup off, I look like a skull. It's pretty unpleasant. My husband keeps saying it may not get any worse but my doctor gave me no hope at all for arresting the loss. He told me to accept how bad it will probably get. He prescribed betnovate, just until I see a dermatologist on Oct 31st. I'm going privately for the time being, until it gets too expensive, since I don't have insurance. Do you think your meds have made any difference? I'm a secondary school teacher but have decided I'll cope better with this without an audience and will resign after half term. Maybe do some volunteering and get things into perspective. Your partner sounds very understanding. It's worth remembering I suppose that for them it's hard too. xx

Permalink Reply by Liz on October 20, 2012 at 2:13pm

I have been taking medication for just over a week and I'm not sure if it's helping the FFA but it has cleared my skin of problems I have had for years which is surprising. I've had a dry excema type rash on my feet and dry skin on my hands where sometimes the skin cracks. Over the years I've tried a range of creams but to no effect. Now, for the first time in years my skin is a uniform colour with no dry patches...I hope it lasts!
You must feel in shock about your diagnosis. Mine was made more difficult by the blase way in which I was told my my dermatologist. He fiddled with my hair a bit and then said, 'It won't grow back and you'll most likely lose more'.
Maybe see how you feel in a couple of weeks before resigning at work. Give yourself time to let things sink in.
xx

Permalink Reply by MairiM on October 25, 2012 at 6:46pm

Changing from Secondary to Primary wouldn't be allowed in Scotland, without re-training. I don't know what the situation is in England.

Permalink Reply by MairiM on October 25, 2012 at 6:43pm

I was prescribed betnovate by my GP too. I saw a consultant shortly afterwards and he changed the prescription to dermovate, Even although you get a private consultation, the consultant will give you instructions for your GP, so that you just pay the NHS rate for your drugs. I belatedly found out that you can get Regaine/Rogaine on prescription too, after I had paid £27 for it. I really can't say if the meds have made any difference or if my loss would have slowed anyway. The Regaine does not help the hair loss, but may strengthen the remaining hair.
I would hate to have to go into a secondary school with this problem. There is no way the kids are not going to notice and comment. If you can afford to leave, perhaps it is a great opportunity to try something else.

Permalink Reply by Mary on September 22, 2013 at 4:32pm

Jules, I have only been diagnosed with FFA for about 6 weeks now. For the last year, my primary care doctor has been adjusting my thyroid because he thought the hairloss (including eyebrows) was related to thyroid. I am very despondent and have been crying a lot. I've also been going through a lot of cardiac problems. The dermatologist has put me on an antibiotic called doxycycline and said I will be on it for a minimum of 6-8 months. If there is no sign of improvement, he will switch me to an antimalarial drug. Do you know why your doctor said there was no hope at all of arresting hair loss? My doctor said there is no cure, they are not sure how best to treat it, but I felt he was giving me hope that the goal was to slow or even stop progression of hair loss.

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