Replies to This Discussion

Permalink Reply by Jules UK on September 23, 2013 at 4:58am

Hi Mary, your distress is understandable! It's the permananent nature of the diagnosis with no hope of regression that I struggle with most. Dr Harries has told me that there are a number of avenues of treatment to follow , some of which carry quite nasty side effects, and none of which have a proven track record of success. He said that he has no way of knowing whether women who stop losing hair have done so because of treatment or would have stopped any way, because of the lack of controlled trials. This is all very pessimistic, I know, I'm sorry. But I'm now trying to focus on how good a wig will look! At least we know we can disguise this. It's horrible and you are right to want to "grieve". Just keep talking to us here. This is where you'll get honest views. X

Permalink Reply by MairiM on October 25, 2012 at 6:36pm

Belated welcome to the group. I have been away for a long weekend and am trying to catch up with all the new postings. My husband in denial also. Like you I have enough top hair to cover the loss (at the moment) and I think he won't even look at my bald areas.

Permalink Reply by Jules UK on October 26, 2012 at 7:42am

Hi Mairi. How long have you known about the problem? Looking back, mine began in 2003. If I'd only known I might have held it back a bit - you never know... How do you apply the Regaine in the morning. When I put it on at night, my hair is so sticky, I have to wash my hair next day and couldn't apply it for daytime. I must be doing something wrong. Do you just use Dermovate in addition to Regaine? I've just bought some Couvre makeup on Liz's advice, and found that Trendco were really helpful and made me feel calmer about my options for disguise!
I've handed in my notice at school and they've offered me a term's sabatical to think about what to do, but I'm pretty sure I'll still leave at Easter anyway.
Hubby is beginning to soften a bit, and starting to realise the implications of this condition for my appearance. Although, I wouldn't show him the bald bits - I can still cover them, just. But the forehead is starting to go and I'm worried about my eyelashes now. Have yours disappeared?
Julie x

Permalink Reply by MairiM on October 26, 2012 at 5:05pm

My eyebrows have not gone but I am a bit worried about them. I was in Skye at the weekend, where the light is different, and I noticed a white line above my eyebrows - the same whiteness as the skin where I have lost hair. Anyone else seen this? I usually make partings in my hair and rub in Dermovate first (concentrating on the front) and follow this up with the Regaine. I rub in the Regain the length of the parting. Who knows if any of this is doing any good! I try to get it into the scalp rather than on the hair, and don't find it is too sticky,although my hair would look a lot better if I didn't have to apply these.

Permalink Reply by Debs on October 21, 2012 at 5:53am

Hello Jules, I think Liz has given very sensible advice, please don't leave your job without giving it a bit more time.. I too work in an environment where I am 'on show', I am cabin crew so I have to stand up in front of hundreds of passengers and point to the emergecny exit rows etc.. I am going to start wearing wigs at work in the New Year. My GP was brutal in the way he broke the news to me that I have alopecia last December. Just like your experience with a your dermatologist. He gave me no hope and didn't offer any treatment. I went away, got advice from a private hair loss clinic in London and then went back to the practice, making sure I saw a different GP and asked to be referred to a dermatologist. I had a scalp biopsy and go back on Nov 4th for results. He already knows it is FFA though. I will post on here what medication he gives me. However, he has only mentioned steriod creams. The children in your school may well not pay that much attention to what their teachers look like, and people change their hairstyles all the time so if you do look different it may not mean anything to them. I have already posted on here that I am taking 5 weeks off work, so I can come back with a new 'hairstyle' and try to get round the problem like that. Please do look after yourself Jules, you might like to look at the website www.wigsupport.com it has lots of lovely ladies on there in the USA who suffer hair loss and are wearing hair pieces/wigs and they have loads of advice on just about anything you can think of. Everyone on this group understands how you feel Jules. Take care of yourself. XX

Permalink Reply by Jules UK on October 21, 2012 at 7:51am

Thank you so much for your kindness everyone! Especially at this very wobbly stage. I'm trying to think of positive steps to take, just to feel like I'm taking some action. Trying that fasting, 2 days a week, regime; also cutting down coffee but wine is staying on the menu for now. I've ordered some aveda hair treatment that I saw recommended here - it,s cheaper at lookfantastic.com, especially if you go via topcashback.com. I'm shopping tomorrow for hats, snoods, hair bands in a range of colours - anything to keep my hair fastened down in the wind! Has anyone tried makeup to disguise pale bits of scalp? My hairdresser is fantastic - I've been with her for 27 years and she comes to my house, which will save embarrassment. I've asked her to research non-chemical hair colour. As for work, this diagnosis has really made a decision for me that I've been pondering for a while. I work at a private school and it's quite stressful. My husband agrees that this could now be an opportunity to change direction, so I'll turn this into another positive I hope. Children have all left home, mortgage paid off (just), so this is the time to do it. I'm appalled at the way some of your doctors have broken the news of the condition to you. I think my dr knew straightaway, but did blood tests to rule out other causes first, only suggesting that dreaded word alopecia as a possible. He confirmed it when test results showed nothing untoward. At least I know I'm healthy! I've wittered on long enough. Off to lunch at mum's with hubby and son. Time to forget hair for a while. Thanks again everyone. Xx

Permalink Reply by Debs on October 21, 2012 at 5:49pm

Hello Jules I have seen a type of powder advertised on tv shopping channels that fills in small areas of hair loss. It comes in several colours and they did a live demo on tv. You just shake it over the spot you want to cover up. Can't remember the name of it but that may be the type of hair makeup you have mentioned. I have not used it but it looked easy to use on tv and it did work very nicely to fill in small sparse areas of hair. I hope you had a nice lunch with your mum and family.

Permalink Reply by Debs on October 22, 2012 at 3:24am

What to wear at the gym when my hair loss gets worse has been a major source of stress for me. I enjoy my workouts and didnt want to give up my exercise in the future. A few weeks ago I bought a couple of bandanas online so I could cover up my hairline when the recession becomes more noticeable. I don't fancy wearing a wig when I am hot and perspiring. However I have just found "transistional head scarves" on the Internet. I have never worn scarves before so I had never heard of them. 4women.com has photos and sells them but you can just tie your own scarf in this style you dontvneedcto buy them ready made. This way of wearing a scarf just over the frontvofvyourvheadclike a headband allows our hair at the back to show so it is suitable for FFA. It is an alternative to wigs although it is quite casual so mat not be suitable for our places of work. I am trying desperately to find pretty and feminine ways to deal with this condition. Not an easy task as you all know.

Permalink Reply by Jules UK on October 22, 2012 at 12:35pm

Thanks, Debs. I've also just found a link on this site from their Shop and Save tab - to a site called Derm Match. It looks good but is expensive so I'll wait a while until things get worse. Not wigs, I know, but I've just treated myself to a small selection of hats, to cater for all occasions..... fine for the winter.

Permalink Reply by Jules UK on October 22, 2012 at 12:35pm

Hi, Celia. You've accomplished alot of research since your diagnosis and it's been really informative to read about it - I've made an appt to see a dermatologist who deals with alopecia next week. The consultant initially recommended by my GP specialises in skin cancer - so that was nearly £160 wasted! Fortunately, I googled him. It does seem that we have to self diagnose and then do the legwork, pulling the medical profession along with us. Is there anyone you've found to be particularly helpful?

Permalink Reply by Liz on October 22, 2012 at 1:44pm

Couvre masking cream helps to hide thinning hair. It takes the glare of your scalp underneath. It's like a foundation that you dab on to the scalp. When I visited Trendco she put some on my scalp and it did the job. It's only £15 a tube and would last a month or so if you were using it a lot. I might get some for if I go out in the evening.

Permalink Reply by Jules UK on October 26, 2012 at 7:46am

Thanks Liz - I bought some yesterday from Trendco. Thanks for flagging them up as a good source of advice. They were very helpful. I've also invested in several hats - but I always loved wearing them anyway.

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