Comment

Comment by Debs on May 1, 2013 at 7:51am

I saw a woman at work at couple of days ago that most definately has FFA, I have never met her before and I decided not to approach her in case I caused offence. Her hair loss is about the same as mine (which I think is about the same as Liz) and she was wearing her hair long and up in a pony tail. Looking at her straight on was OK but from the side view the FFA was evident. I saw 2 ladies in the waiting area at the hospital the other week when I saw Dr Harries, both had FFA and were trying to style their hair without using supplemental hair. I can see that it is possible to brush it forwards and wear a fringe to a certain extent but the hair loss notices sideways on more than when you look at yourself in a mirror from the front view. Pam's suggestion of getting a fringe piece would work as would Celia's suggestion of having a fringe cut in from further back if your hair will allow. I would just say having seen these 3 ladies and their hair styles do just check yourselves out from the side view when deciding how you will manage your hairdos because from the side view the recession is more noticeable than from the front.

Comment by Jules UK on May 1, 2013 at 3:54am

Liz, I really admire you (and Debs) for putting up your photos! I find it helps me to connect with others on the forum, but I'm not brave enough to do the same yet... My hair has gone further back over the ears and the skin is completely smooth with no trace of hair left. The forehead is going the same. My hairdresser is great and cuts what's left to maximise volume with layers and a fringe. You wouldn't know I had a problem, until the wind blows! We're all so different and yet the same -does that make sense?
Have ordered a buff from play.com. They have a good selection, good price and free postage. Thanks for finding out about those, Debs.
So looking forward to seeing everyone. Xx

Comment by Celia on May 1, 2013 at 3:33am

Pam - I too have no idea why days are different - could be diet/stress or something we do not know about...... I am using the Philip Kingsley dandruff treatment and it worked the other day - I use Kerastase shampoo and also the Kerastase Bain Satin conditioner - the latter is making a difference to dryness - it actually feels like hair again ! For how long who knows ? Of to run around the gym - escape a bit ! x

Comment by PamW San Diego, CA, USA on April 30, 2013 at 6:48pm

Celia, can you determine what the ingredients are in the shampoo you tried? We don't have that brand here and I was wondering, if I could look for something similar.

Liz, there is a product called a fringe. You clip it into your hair and it covers the exact area you are missing and blends in with your other hair. it is not a full wig, just a little piece. I tried it when I was diagnosed a year ago. I have lost just about the same as you, and can still hide it with my haircut. perhaps you need to try another stylist. I switched stylists after I was diagnosed. I loved my former one, but she didnt want to spend the extra time with me to figure out different cuts, etc. My new girl has patience and works with me to adjust. If and when the time comes, I will just go with a wig because I like volume and the topper piece doesn't give me volume in the right places. I posted a picture of me wearing it on this website. I bought it when I thought I was going to wake up without hair, in a moment of sheer craziness. I am calmer now.

I had such an awful scalp day yesterday and today is totally better. I just know that there has got to be a reason why one day is worse than the other.

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)

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