Just diagnosed...and I am a mess!

I am a 32 year old woman and three days ago my mom looked down and said "Why do you have a bald spot on the back of your head?" I, of course, completely panicked and we almost immediately found 3 more large spots on my head. A doctor's visit today confirmed it... I have alopecia. My general practitioner wasn't overly informative and offered me a referral to a dermatologist. (Which, of course, will take me several weeks to get into see.) So, besides that I have been left to google to figure out about alopecia.

I am honestly an emotional mess. I have always had beautiful thick hair and I am shocked that this could happen to me. (Very selfish, I know.) Although I am thankful that as of right now I can hide the alopecia, I am nervous beyond belief of what is to come. As I look back on it now, I have had a lot of hair in the shower drain the last few months. But now, I am literally afraid to take a shower and/or brush my hair. I just can't bear to see my hair fall out.

My husband is not being very supportive and looks at me like I am contagious. Our marriage is already rocky and I am not sure my husband has it in him to see me through this. My mom and sister are using the "at least it isn't cancer" position to try and boost my spirits. My children are little and have no clue what is going on. But, I catch myself looking at their beautiful long curly hair and hoping to god I haven't passed this on to them.

I am making myself sick over this and causing myself even more stress. I am really struggling with the unknown in all of this... I guess this is just a day to day thing for the rest of life? I feel like there are so many options rogaine, cortizone shots, vitamins, diet...but with nothing being certain, I don't even know where to begin. Help!

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Permalink Reply by Tallgirl on June 26, 2012 at 1:13am

You need a pal in this...or three or four of 'em. Yes, hair can fall out more. Yes, husbands can leave (mine did when I got AU for awhile). No, there's no permanent cure yet. My kids and grandson never got AA, and I am the only one in the family as far back as I can trace through photos...so no, it doesn't always appear in children even if genes might carry something. Rogaine can mess up women's fertility...read labels and get facts. Shots in the head hurt and leave dents, as do the shots in the hip. Prednisone can mess up your system, as can any chemical changes (I got AA and worse after 15 years of remission, right after I started birth control pills. Doctor took me off the pills, but I think it was too late to reverse the alopecia.). Another good site to look at is www.naaf.org (see if you can get in on the conference in Washington D.C. in July). Welcome to AW!

Permalink Reply by BMG on June 26, 2012 at 5:21pm

I know where you are at. I was certainly in that panic state in October when my one spot started spreading like wildfire to 9 spots. Now I have bought my first wig and still getting used to the idea of having to wear this thing. Eyelashes have partially gone and eyebrows are all but gone. The upside to all of this is that there are some amazing products out there so no one has to know. I found a wonderful salon through our hospital that deals with only hair loss in women. You may be fine. I had lots of spots show up then just fill in with no treatment. This time was different though. Nothing was working. I was on shots, vitamins and even a chemotherapy drug to suppress my immune system. I finally said I am tired of putting this dangerous stuff into my body, when I am perfectly healthy. I certainly do have my why me days. I look at everyone with hair and wonder if I will ever get it back. I have three children and my oldest who is 15 is the only one who knows. The other two are oblivious and my youngest (10) is very observant. So I think I have done a pretty good job with the cosmetics.

What i suggest to you is if you think this is getting to a point where it is not slowing down, don't wait to get a wig. It took me many weeks to find what looked like my hair used to, get it cut to the right thickness and get it to be comfortable. I think I would have had a much easier time doing it while I was in dire straits for some hair. Also it would have been much less noticeable. I had super thin hair that was pulled in every which way to hide the spots to boom hair. I wish I wouldn't have waited.

Hang in there. This site is a lifesaver.

Permalink Reply by AndreaB on June 30, 2012 at 8:50pm

Thank you for the words of wisdom... I am now on vacation and have decided to live in a state of denial as long as possible! I am surrounded by my parents and old friends for the summer which will probably be the most healing way to help my ego. Hoping to find the strength to return to my classroom in September and face the curiosity of a classroom full of kids. :) I am bummed I can't make it to the conference, I only live 20 miles from D.C. Is it held annually in DC?

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