Replies to This Discussion

Permalink Reply by NancyinDenver on December 24, 2018 at 1:58pm

Hi Lu-

I highly recommend the Cicatrical Alopecial Research Foundation.  Their website has lots of helpful information.  You can get on their mailing list by signing up for it.  You can also email them for help locating a support group and/or doctors in your area.

http://www.carfintl.org/

I was just diagnosed with FFA in July, and then LPP (the full scalp version) in November. It's devastating, especially the first few weeks.  You'll get through it, though.

Permalink Reply by Halfbakedwho on December 25, 2018 at 4:37am

Hello to you,

I too am a fellow depression sufferer, (feeling okay right now, thank you psychoanalysis). I was diagnosed in 17, noticed the hair loss in 15. 

I have found - even though it's a bit of a cliché - that even though I have less hair then when I was diagnosed, I actually feel better today emotionally. The cliché being - that time has helped me deal with this. 

I have been prescribed a lot of crap that I don't take, aside from topical Clobestasol that doesn't seem to do much. This is a personal choice - given the depression history, I am very wary of adding more meds into my system aside from the low-dose anti-depressant that I will need the rest of my life. 

Feel free to message me. I go up and down, but mostly today, I look at my scalp, grimace, and get on with my day...  ; ).

Permalink Reply by Louise on December 29, 2018 at 7:36pm

Hello Lu,

I am quite new at this forum.  I had my FFF diagose 3 years ago and I will ´quote what my Doctor said " You should not be ashamed of for your feeling s or  your depression, What women woudl´t be. The disease is progressive and changes your look every six month and the disease is more or less incurable.-  

I have tried psychoanalists,. but I felt minimized by her way to treat mw. The only Word  they repeated  Acceptance, Why should any person accept diseses. I is hard enough cope with it. But Acceptence no.

I have tried several meds, Finasteride, Plaquenil, Clobobestaln and I will start to use a new med i Janyuary. That is my way of coping to test new medications, 

The first Three month after the diagnose I froze in chook and then hade severeal panic atacks. I read some articles about FFF not very encouraging I even so photos from women that ha lost at least 14 cm of their frontline. And they look so scarry, so I hav´nt a Word for it.

I must say that the antdepressent the doctor precribed for I least made my panic attacs better. But I live inte this dark bubble and depression digs bigger every day

The worst thigs my friends  and family can say in this moment.You are lucky you haven no cancer I KNOW THAT and I am gratfule for that.v´´

but this i ´s social diseese that cuases bad self conficence ,social isolatin .You won´t tho dothing you likd before

Hope you will cope with you FFA

>>Regards from 

Louise

Permalink Reply by Afraid on December 26, 2018 at 7:46pm

I’m so sorry Lu that you have this diagnosis.  I have found this group to be really helpful.  I was in absolute shock and disbelief when I first found out just over a year ago.  To be honest I wanted to run to the hills so to speak.... with time, the shock subsides.  I found myself going through the grief process.. the loss of hair and identity...fear of the future etc. I find things that keep you cheerful, relaxed and as positive as possible, such as yoga, dance, walking and of course family help massively.  

I have tried various medications without success.  But as I try each one I have such renewed hope and that’s part of coping.  I find this group particularly helpful because people are at different stages and when/if hair loss is so great that hair replacement is needed there are terrific examples of brave and beautiful ladies who have shared their accounts and photos and I think everything will be ok. I never stop trying to work out why this is happening....  Please email if you want to chat further. 

Permalink Reply by Lu on December 27, 2018 at 2:27am

Thankyou everyone for your replies. 

I feel so self conscious... My hair has receded to my ears so far & frontal hairline is completely ragged. It’s the middle of a hot summer here & I’m afraid to pull my hair back in a ponytail as the bald sideburns are obvious; I’m pretty much staying at home & walk with my head down & don’t make eye contact when I do go out ...

How do you get over the self consciousness? If I’m like this now what’s it going to be like when i’ve Lost even more hair?

Permalink Reply by Halfbakedwho on December 27, 2018 at 4:34am

Have you been to a wig/hairpiece shop? I have found them to be so helpful and comforting, even if for now I just pull my hair down to hide the loss. Or could you wear something that isn't too hot to cover your head?

This will soon be an issue for me too. I have very thick curly hair which I can pull down, but it's also terribly hot in the summer, and I can't pull it back either b/c it looks too strange (bald).