Comment by Leon Johnson on October 16, 2008 at 12:43am

Yes. That's exactly how you say it. It's a rare form and a lot painful. If you go on the CARF website there's information about it.

Comment by as on October 16, 2008 at 8:35am

Hallo Leon,
I have got also alopecia Cicatricial.At our place in Czech republic I don't know anybody next from by this one form.Visited am much doctor,also abroad.No me but fail to nohow assist in.One German doctor me advised.How have smooth leather scarless.He says.There where isn't hairy rootlet,cannot do inflammation and epulosis.He advises me let do leasser extraction sheen.No other doctor me at it ,but fail to nothing tell,whether that it is possible.Made am small attempt on back of the neck.It seems, that the it functions.Very it,but ails and is that a darling(big pennies).Be afraid therefore go on. as

Comment by Cheryl, Co-founder on October 16, 2008 at 9:44am

Hi Leon, Timothy, As. I now some of you are already a member of the group. But I wanted to mention for others that there is a group on Alopecia World for Cicatricial (scarring) alopecia.

Leon, I can certainly understand why you would be more hesitant to shave it all off. But in your photo it looks like you have. How and what made you take that step?

Comment by Leon Johnson on October 16, 2008 at 11:23am

Yes Cheryl, I've seen that group for scarring alopecia. Thanks. I just didn't know the offical name until yesterday. Crowned Regal and I were having a conversation and she told me about CARF.

Sure I cut all my hair off but I guess the scarring is more visible to me. I've got more dark spots on the sides and back. It's all good though. I'm trying to lighten them up.

Comment by Royalty on October 21, 2008 at 11:17pm

Hi I'm new here! I have this type of alopecia for about 3 years now. It was extremely hard to deal with because I always had long full healthy hair. The scarring does look burnt.

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