Comment

Comment by Liz on April 30, 2013 at 5:34pm

Hi Celia. I dont wear the hairband much, only when I want to forget about the hairloss. I wear it now several times a week and sometimes in the evening. I have a son with Aspegers who is facinated by my hairloss and not in a good way. A few days back he told me that 'it looks like a scar around your head'. I said to him 'Are you being horrible about my hair?' He looked at me and said, 'No, I'm being horrible about the bit that has no hair'. He also keeps asking if I have cancer. He thinks that losing my hair is a symptom of cancer even though I have tried to explain that it's not...And so, that is why I am wearing the headband more! And, alas, I dont have enough decent hair to make a fringe. The hair on the top of my head is thin and has gone frizzy. I asked the hairdresser and she said there is not enough hair. I may try some Philip Kingsley shampoo. My hair is so dry. I went to the doctors yesterday with itchy sore ears and she mentioned anti inflammitory drops for them or almond oil. I wonder if that would help my head.
xx

Comment by Celia on April 30, 2013 at 5:17pm

Liz - I am about 18 months down the line also. Suggest you stop covering your hairline with a hairband and instead make a fringe. Just bring your hair down over your forehead. Not sure how long the rest of your hair is, but maybe have it cut shorter ? Fluff it up a bit. Yesterday I persevered with some product from Philip Kingsley - anti dandruff cream - you put it on your hairline and wait 20 mins then shampoo as normal. I have to say that today - I have had no redness on the hairline and haven't used the dermovate/clob cream today. Liz - get a little air to your hairline, don't cover it with a hairband - just let your remaining hair do the trick. I am so sorry - this is just a thought. I do look forward to meeting you. Just try what I suggest, please. x

Comment by Liz on April 30, 2013 at 2:52pm

My hair is getting worse :o( I've now lost this much, and I've only had this 'thing' for 18 months. I'm not feeling depressed about it today, just angry. Tomorrow I may be depressed and then I shall drink tea and knit another headband!
xx

Comment by Liz on April 30, 2013 at 2:51pm

Comment by Celia on April 29, 2013 at 5:35pm

Ha ! Ha ! Liz - that sounds a shade too desperate ! Although I must say - desperate is really how I feel some mornings when I wake up and the enormity of this horrible disease is there. How good it would be to wake up and not have this to be The First Thing to think about ! I expect many of you feel the same. Oh dear, this self-pity is NOT the way forward ! Interesting what you said, Heidi, about the singer - I know that in one year from the 23rd or so of June we have 'collected' over 50 women on this site with the problem. Sounds a lot, but I think this FFA is still very rare - just over 50 people in a few countries is not many. There must be a lot our there who suffer with this and are not able to communicate with others in the way we do. The loneliness and fear I personally felt before 'meeting' you ladies was scary to say the least. Well - tomorrow's a new day - hope it's a good one for you all ! x

Comment by Liz on April 29, 2013 at 3:57pm

Maybe we should all run naked through London. That way we'd be high profile. The newspapers can fight our cause as we sit in jail. 'Free the FFA 57!' xx :o)

Comment by Heidi Short UK on April 29, 2013 at 3:24pm

Thanks for the clarification Debs!
Celia its funny you should say that about a high profile person. I was watching E News this weekend ( American show biz program!) and they were talking about a Reba Mcintire, a famous country singer and they showed a picture and I immediately thought she looks like she has FFA, I don't know if she has or not but it did make me sit up and have a second look. I did go on the internet to investigate but there wasn't anything, not that I want the poor women to suffer from it but I did think it would be great if someone famous could front our cause!

Comment by Celia on April 29, 2013 at 12:44pm

Hello Debs, Liz, Heidi Jules Caro, Paula hopefully I hope to see soon. I hope the day will be good. Well we shall MAKE it good ! Bring some walking boots/trainers......and we'll get some fresh air - hopefully 3 days later - we will all be cured ! Liz - every time I wash my hair and dry it - the sun is shining through the window (well if it does !) and I can see hair falling. I will ask Dr H if that hair gets replaced or not - but I expect the response will be - not enough evidence to make a judgement. Oh dear. I think it must be a very difficult job for him to see so many ladies with this prob and not to know the answer. But I guess his day must be bespattered with folk with other derm probs.......I have said before - if a really high profile person developed this FFA prob - it would maybe get solved sooner. X

Comment by Debs on April 29, 2013 at 10:10am

Heidi

HYDROXYCHLOROQUINE sulphate is an anti malarial
DOXYCYCLINE is a tetracycline antibiotic

They are 2 different drugs

Comment by Heidi Short UK on April 29, 2013 at 9:55am

Hi everyone, thanks for the article Pam, looks interesting. Hope everyone is ok, looking forward to seeing some of you in a couple of weeks. Celia and Liz, when you say you are no longer taking doxy do you mean hydroxychloroquine sulphate or is this a different drug? i'm getting confused!
Is anyone suffering from a sore mouth and tongue, I don't know if its to do with the problem I have with itching salivary gland or its something else.
Liz I hope you are feeling better , I've been thinking of you today, keep your chin up, its hard when your appointments keep changing, but it will be worth it when you do get there. I wonder what he will perscribe you instead.It will be great to talk when we all get together at Celia's.
My sister went to an new salons open day last week, and they had a Halo Elite which uses a laser light to strengthen the follicle so they produce thicker healthier hair for people who have a problem with thinning hair, is this the laser treatment that ther was discussions about a few weeks ago. I might go for a free consultation1!

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