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Comment by sallylwess on August 15, 2015 at 12:17pm

Marion, the piece is not going to be human hair.  I was conflicted about making this choice, but in the end, went with the professional's advice.  She will style it to look like my hair.  It cost me $1150.  Unfortunately, I think I have already spent that much on hair pieces and wigs that were really not right for me and did not work.  I would have save myself a lot of money and grief if I had gone to a professional who works with medical wigs instead of going to wig shops.  I wasted my money in wig shops and never got anything that really worked even though one topper that is labeled as human hair appears not to be.  The professional at the medical wig shop tested it and said it is probably human hair mixed with synthetic.  It cost $500.  It is the wrong color for me and really can't be styled or dyed to work.  Buyer beware.  Work with medical wig people.  I will never go to a wig shop again.  

Comment by Sad in chicago on August 15, 2015 at 10:45am

Not sure who asked about costs but I will share my experience for hair pieces (or toppers as you have been calling them) that clip in, covering the front (wearing bangs helps of course with the hairline) and blending with my own sort of shortish, pixish look. T have two peices. The first, and best one, is human hair, I even have it dyed it occasionally, as it fades lighter than my own hair color from being in the sun and outside, and it cost $900 new. I have had it for over a year now, take very good care of it, washing and styling with the wig shop mostly, but sometimes myself, and I think it is a follea brand? I also have a synthetic piece, similiar in style and color, so I can switch and people won't notice. It cost $200. Much easier to wash and care for, and I wear it for summer outings, exercise, hanging out at the pool (I don;t really swim in it tho) and it just washes and shakes out. Both pieces have been professionally styled to blend into my own hair. I won't leave my house without them. I thought I might save some money with this disease, but between caring and cutting and coloring my own hair (such as it is) and taking care of the pieces, I am still not ahead financially. However, it is worth it, at least to me.

I am with Sally -- doing nothing, taking nothing, just interested and supportive of efforts to determine what this ridiculous condition is and how it can be helped. But in the meantime I try to face the world as "me" still and most days -- not all, of course -- I feel like I am OK.

The name of the shop in Skokie, outside of Chicago, where I purchased my pieces is J. Krause. They do a lot for cancer patients too and the owner, Sandy, is very helpful and will take a lot of time to get you the best option.

Comment by lacazette on August 15, 2015 at 9:27am

Interesting Linda, it could confirms that overactivity of Aldh1A1 could be a major factor of our hairloss. Some because of hormonal, some because of genetics, some because of chemical (accutane), whatever the cause, but our vitaminA metabolism/signaling is altered, and inhibit this Aldh1A1 could really help to regulate, and slow the hairloss, as the researcher explained.

there's already chemical formulations of selective Aldh1A1 inhibitors, some who have aggressive hairloss like me would need to test it asap before it's too late, but how ? that is the problem,  I'm afraid that no professional will help us :/

Comment by Sas Holland on August 15, 2015 at 8:19am

LoriO; I too have skin changes. The skin on my arms shows more and more darker pigmentation areas, not being just spots from groeing older, but much larger. Also in my face I see more darkning. I usually have a fair skin and I almost never do notsunbathing, because I don't like the heat.

Comment by Marian on August 15, 2015 at 12:40am

Sallylwess- not to be nosy but may I ask what they are charging for a custom piece. I too am looking at a custom piece and here in Canada I have been quoted 1700.00 for human hair. I am concerned about my hairline changing since I am not at burnout then having to purchase another very quickly. Will yours be a topper or a glue on one?

Comment by LoriO on August 15, 2015 at 12:32am

@Sadandunsure I had really low ferritin too. Mine was 6.  I started taking iron supplements a year ago and I'm only at 64 now.  I've read that low ferritin can cause hair loss and that it won't regrow until it reaches 70. I was hopeful that was my problem, but I don't really think so.

@ Linda in Cincy, I thin there is definitely a hormonal connection.  I have been on thyroid medication for most of my life, and was on birth control pills for about 30 years.  When I went off them in January 2015, my hair loss really accelerated.  My hair loss started while still on bc pills, but I lost most of it after January.

I'm taking the Plaqenil, hoping I can at least stop it from getting worse.

I wonder if anyone has also noticed overall skin changes?  My skin texture is completely different, thin and wrinkly and weird. 

Comment by sallylwess on August 14, 2015 at 10:47pm

I took a huge step today.  I saw a wig maker who is making me just a frontal piece that will take the place of my bangs.  I have tried head bands, wigs, toppers, and even made two toppers out of two different wigs myself.  Now, I am having a professional make me a piece that will just be attached by tape and clips in the frontal area where my hair is gone.  

I have decided to be practical and get the best coverage for my own hair loss that I can and go on with my life.  I will not be treating this condition with medicines because I have had terrible allergic reactions to everything I have tried.  I support all of the efforts that others are doing in finding out what is causing this terrible disease and applaud all of you smart women.  I think we need to use our voices to advance research in this area.  I am grateful for this forum and for each of you.

Comment by Lo on August 14, 2015 at 10:26pm

I love all of the smart women on here. Inseear we can do this ourselves... With, of course, some support from our docs. I will share this with dr. English here in Pittsburgh. And Linda from cincy...I have to ask. Is that a wig you're wearing in these pictures? Chat shirt pixie as over the top adorable on you. Very clean and classy looking. So ...is it just your hair???

Comment by Linda from Cincy on August 14, 2015 at 9:59pm

Based on the research done below I wonder why they jump to the conclusion that it is only estrogen that suppresses Aldh1a1?  Since they removed the ovaries of mice in these experiments that would have also ended production of progesterone.

"The researchers surgically removed the ovaries of mice to test whether estrogen could be related to visceral fat production in females. As soon as the animals became menopausal and weren’t producing estrogen, they began to produce retinoic acid, which led to visceral fat formation."

http://researchnews.osu.edu/archive/visceralfat.htm

Comment by Sad in chicago on August 14, 2015 at 5:49pm

I have not had a biopsy confirming FFA other than the very obvious appearance of it along with all symptons.  During the early phases I was very itchy, and occasionally I will notice tiny red bumps where there was loss, but now I am smooth as can be with this shiny white forehead moving back where the loss is from the front of my hairline as well as the sides of my head and around my ears.  It seems to be slowing down, but frankly since I am wearing my hairpieces I do not notice the loss as much as I hate looking at it, and cover it almost immediately upon getting dressed.  When I wash and blow dry my hair it can look surprisingly ok for a few minutes, but it is deeply thinning on top and the front is frizzy often when humid or hot out.  (how I long to be able to wear a pony tail or pull my hair up......!!!!)

I am finding this scientific discussion confusing but will mention to my dermatologist next time I see her within coming months.  

Thanks for sharing all your research.

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