Replies to This Discussion

Permalink Reply by sunstar7 on April 30, 2010 at 10:27pm

Hi, Barbi. I'm new here.I'm sorry to hear about this, but I really understand what you are saying! I was just diagnosed a few days ago, and I'm still in complete shock.. I've been crying off and on, and am just in disbelief!! I had no clue of what was happening to me; finally on the 4th doctor, i have an official diagnosis... Sigh..Anyway, why are you regreeting the wig? I pray that we will all get through this and just take it one day at a time...

Permalink Reply by Barbi Cooper on April 30, 2010 at 10:44pm

Thanks for responding...I think for me, getting the wig is an admisison of giving up maybe? I don't know..but it's hard to come to terms with loosing my hair. For a woman, it's huge! I hope I can be strong as time progresses.

Permalink Reply by Trina Berry on July 23, 2010 at 11:05am

Barbi,

I know how you feel. I was diagnosed with CCCA back in April also. This has been VERY difficult for me to deal with. I just recently joined AW in hopes to find support from others with the same type of alopecia. I was wearing weaves, ponytails, and recently in January wigs to cover it because the weaves seemed to make more come out. I think we're in the right place to find the support we need to help us through.

Permalink Reply by Angie P on September 10, 2010 at 1:30am

Hi Barbi!

I was diagnosed this past June. Copies of my labs are in my photo album. I still have a significant amount of hair left and its texture serves to hide my patches. Because of this I have not yet experienced as much emotional upheaval as others have.

I had already been lurking here before I went to the derm, so I was already aware of the incurable nature of alopecia. I didn't go to the doctor so much with the idea of saving my hair, but more with the idea of saving my sanity. The itching and pain were driving me nuts. She prescribed Olux-E foam and Rogaine 5% for my scalp. She also prescribed Desonide lotion for itchy eyebrows and **other** itchy areas. **smile** The Olux and Desonide worked very well. The Rogaine caused hair growth pretty much everywhere, so I discontinued it in mid-July. She said this response was unusual, as if she didn't quite believe me. I said okay, "whatever" I'm not using it anymore and that was that. :)

Right now I 'm using the Olux in a maintenance capacity to keep the itching/burning at bay. She explained to me that the inflammation that is causing the itching/burning is what is damaging the follicles and causing the hairs to fall out. If I can keep the inflammation down I think I will be able to shave without a problem. Like you I am also concerned about how my bald scalp will look due to the redness and bumps.

You're not alone. You should also check out Crowned Regal's group and profile. She has this type of alopecia as well. She also has an extensive website and Tube channel. I think you would find comfort in her messages.

Permalink Reply by Amanda on March 10, 2012 at 10:12pm

Hey there Barbi! I was diagnosed this past week with LPP (Lichen Planopilaris) which is a scarring alopecia. I too had the promises of a cure and was speechless with shock when I learned my diagnosis. I went almost 2 years with significant hair loss before being diagnosed, I am in the anger stage and so so so sad. I am mourning the two years of hair that I lost that I will never get back because of the type of alopecia I have. My doctor said it was female pattern baldness and just something that women go through. So annoying! I had no symptoms that are typical like the redness, itching and such. Good and bad I guess. I am obsessed with hair. I STARE at every woman I see with lots of hair. I think we are very lucky to have found this place. I am so sorry you are going through this. I am also in the poor me stage... I am in mourning. I have no idea what is in store for you or for me. One day at a time, I guess. Stay strong and try to stay positive.

Permalink Reply by Barbi Cooper on March 15, 2012 at 11:26am

Sorry to have been away from this forum for a while. New computer... Just to update everyone. It's been almost a year, on April 15 actually, of when I shaved my head. It was getting increasingly more difficult to cover up the bald spots. I heard that it's much harder going bald than being bald. SO TRUE! That's not to say that April 15, 2011 wasn't the hardest day of my life, but since then, it's been fantastic. I bought a wig from Peggy Knight, a gripper, and love it! My style is almost the same, color a bit lighter. Friends say I look 10 years younger. Not that I totally believe that, but it feels good to hear it!

I like your last remark there Amanda, Stay Strong, and Stay Positive!

Permalink Reply by Amanda on May 22, 2012 at 9:10pm

Thanks Barbie! You inspire me! Hope I can be as brave and happy as you. Congrats!

Permalink Reply by KarenGinny - Iowa, US on June 28, 2012 at 9:58am

Hi everyone, I was diagnosed this spring with FFA, and I'm still getting used to it. I have my good days and bad days. I still have enough hair to hide the bald patches, but worry it will continue to get worse and be harder to hide. I know people say, "you can just get a wig" like I can just run to Wal-mart and grab one off the shelf. I don't need one yet, but eventually maybe. I'll just try to deal with it the best I can til then. I am lucky my regular hairstylist has been very kind to me since I told her and has tried to help me cover it. Somedays I feel like I have enough other problems to worry about, I don't need this too! And the stress will only make it worse. Just have to try to be happy about the good things in my life, my husband & my 2 sons.

Permalink Reply by Barbi Cooper on June 30, 2012 at 9:09am

I understand Karen! I was fortunate to have a wonderful stylist who helped a great deal.
Focus on the good things in your life. It's what we have to do. Be stronger than our afflictions.

Permalink Reply by Barbi Cooper on June 30, 2012 at 9:11am

You are so right Celia! When well-meaning friends would say that to me, I wanted to scream! Sometimes people just don't get it. They take having hair so much for granted.
Good luck!

Permalink Reply by Chris on August 16, 2012 at 5:49am

Hello Celia, I was diagnosed with FA over a year ago now.Since then I have been applying dermovate lotion.It just slows the hair loss down no cure. I have been losing hair for about 4 years albeit slowly. To get a definate diagnosis is horrible. This type of alopecia is not very common so I am interested to chat to anyone with the same thing so we can compare notes on treatments and our feelings in general. My hair at the front now is very thin and has become frizzy and I am feeling low, my doctor put me on a mild antidepressant a month ago as yet I do not feel much different. When you return to UK try and see a dermatologist the specializes in hair problems.

Permalink Reply by Barbi Cooper on June 30, 2012 at 9:12am

Amanda,it's not been an easy road for sure. It's one day at a time. I still have "bad hair days", even with a wig! But at least I don't have to worry about my bald spots showing anymore.

Take care!

• ‹ Previous
• 1
• 2
• Next ›
• Page