Comment

Comment by Jules UK on May 25, 2013 at 4:39pm

Thanks Kath. It's sleeping in a wig I'm curious about most. I'm noT ready for a wig yet and am still hoping against hope that it might not come to that. But who knows?

Comment by Kath UK on May 25, 2013 at 3:30pm

Hi Jules. About my hairpiece. I don't think I could swim in it but I haven't asked about that at the wig studio. And I wouldn't sleep in it because of the clips (and I think it would damage the hair which is synthetic, not human hair). If you look in Alopecia World under 'Wigs, eyebrows, hairpieces, fashion' you'll find a discussion about swimming in wigs. I think you might need to have no hair at all and use a vacuum wig to swim in but maybe there are other options. I think I'll just get a swim cap - possibly with a fringe attached!
I have had FFA for over 8 years but I'm not sure exactly when it started as it was so gradual that it was some time before I noticed it. Oh, by the way, if you Google 'swimming in a wig' you will find more information.

Comment by Jules UK on May 25, 2013 at 7:12am

That's interesting, thanks Kath. Are you able to sleep or swim in your hairpiece? And do you mind me asking how long it has taken to lose so much of your hairline? I know this is different for us all -my hairloss above the ears has taken about 8 years but the front is thinning very quickly.
Rebecca, I really feel sad for how you're feeling. This FFA is truly horrible and you describe so accurately the feelings we all experience at times. I wonder whether we'll ever accept it; for myself, the best I can manage is to ignore it, once the make-up is on, by keeping busy. Sounds tame perhaps, but it's helping. Good luck with your new derm!
I'm going to see Dr Harries on Friday 31st, so if anyone has any questions......... I'm going to ask about body hair loss. I'd only lost underarm hair, but it's grown back! Just under the right arm!! Weird. And eyelashes - which are now stubby and patchy.
Doxycycline hasn't helped so I'll probably start Panquenil this time. My optician says that it's used as long term treatment for rheumatoid arthritis and if eye problems are detected, they can be reversed if discovered early enough. So he'll see me every 6 months.
Have a good long weekend everyone. Enjoy the sunshine! Julie x

Comment by Kath UK on May 24, 2013 at 4:53pm

Hello Donna - nice to hear from you. My hairpiece is an Ellen Wille piece and is not a full wig. I think it's quite flattering. It has sticky tape strips that attach it to my forehead and three little clips at the back to attach it to my hair. It's a lace front piece so the hairline looks pretty natural (my own hairline has gone back over 2 inches now.) I find it comfortable to wear but we are having a very cool May in Scotland (temp. here today was about 12C) so heat hasn't been a problem so far. I'm not sure what it would be like to wear my hairpiece in hot summer weather. (It seems there are advantages to Scotland's cool climate!) Hope this info is some help. I'd suggest you go to a good store and see what they have to offer in the way of wigs. You might get a pleasant surprise. My hairpiece has really boosted my confidence.

Comment by Donna on May 24, 2013 at 1:58pm

Kath - can you tell me more about your hairpiece? My hairline is so far back on my forehead but I don't want to use wig yet. How does it attach? Is it hot? (I know you look hot but is it warm to wear in summer?)

Comment by Celia on May 24, 2013 at 10:43am

Rebecca - very sorry to hear this. I know it is small consolation - but you are not alone.

I have had the steroid injections and I haven't got a clue as to whether the effect has been good or not.

This is an awful disease - unpredictable, incurable and seems to be arbitrary as to whom it descends upon. I think stress of whatever kind must send the body into some kind of preservation shock. My daughter told me of a friend's mother who lost her eyebrows instantly when her husband died of cancer.

Rebecca - the injections might help but they do leave some indentations - but if you have fringe they can be hidden - and really I wouldn't mind betting that nobody would notice.

It is almost a year since this FFA site began. I keep wondering how long we can have sooooooooooooooo many pages stored. A few of you were here in the very early stages and have thankfully continued to communicate. Recently a few of us ladies in UK got together and I can't emphasise enough how helpful that can be. It is good to communicate over the internet on the forum - but - really brilliant to chat face to face.

Holiday weekend in UK - hope you all enjoy it ! X

Comment by Kath UK on May 23, 2013 at 4:39pm

Rebecca, I really sympathise with you because a similar thing happened to me. It's horrid, I know, and you feel so helpless. In my case the new patch of hair loss that suddenly appeared behind my ear has stabilised though my hairline at my forehead is still receding. I'm now at the stage where a hairpiece is my only option though I've resisted getting wigs up to now. One nice thing is that my new hairpieces have brought me some unexpected complements and my granddaughter is begging to be allowed to borrow one!

Comment by KarenGinny - Iowa, US on May 23, 2013 at 2:26pm

Rebecca, I know in my case some of my hair loss was gradual where I didn't really notice it til it was gone, but at at least one time I had hair pulling out at my temples very easily right during a very stressful time when my husband was in the hospital with heart problems. I was shocked to see it coming out so easily, but figured it was due to the stress of my husband having a near heart attack since it happened within a few days. He is much better now, thankfully. Since then, the rest of my hair loss has been more gradual, just finding lots of hair in the drain and seeing how thin it was getting. And then sometimes I think the FFA stops for a while and calms down. I'm seeing a new Dermatologist who I hope will be able to help me. He's is supposed to be going over my records from another Dr and calling me back soon. I hope he has good news!

Comment by KarenGinny - Iowa, US on May 23, 2013 at 1:36pm

Rebecca , I'm so sorry, it is like a nightmare when you first discover your hair just coming out so easily, realizing you have large bald areas to try to hide. I've mostly come to accept my hair for the way it is and become better at concealing it, but it still is not easy. I know it's not easy to do but try not to obsess about it too much, that will just cause more stress and may make it worse. Try to concentrate on the good things in life, family, friends, hobbies you enjoy, soothing music. Just know that you are not alone here, we've all been through this.
And Hello to Mary, glad you are here.

Comment by Mary on May 23, 2013 at 12:59pm

By the way everyone I am new to this group and am already finding it a great comfort and encouragement to know I am not alone.

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