Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on March 23, 2009 at 9:05pm

Hi Kerri-

Can you please shed light on a new bit of information I came across which summarizes the findings of the genetics article linked from Sciencedirect.com in your note above?

The May 2007 NIAMS Spotlight on Research 2007 says in summary about that genome study :" Another observation is that people with immediate family members with alopecia areata have 10 times the normal risk for developing the disease themselves. "
So is that the approximation of a lifetime chance of having any form of AA at 1.7% x 10 = more or less the 20% chance usually cited for close relatives?


And, are there any updates since you last wrote about the validation procedures of the Quality of Life Questionnaire?


thank you,
Thea
www.BaldGirlsDoLunch.org where I like blogging with up to date medical topics for the alopecia community.

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Permalink Reply by Amanda on January 21, 2009 at 11:12pm

It's interesting to hear that they will send you the tubes so you can do the draw locally, I know I looked into registering a couple years ago but saw there would be travel and decided that would be too expensive so didn't. I will definetly do it now. Thanks for all the info!

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Permalink Reply by Lynn AKA Mom of 2 w/AA on January 22, 2009 at 9:59am

Hi Amanda! Glad to learn you are participating too. I called the gal over at the Houston Registry, and she is sending me more paperwork, as well as the tubes. The kids are sooooo very selfless, in that they both agreed to donate their blood if it will help other people! I'm very proud of those two. Now, I am just waiting to receive the tubes, etc. It was either in this discussion or another, where Lindsey provided the name & number to the gal in Houston. When I telephoned the Houston office, I had a long conversation and was surprised to learn that research is pointing to the environmental causes, in that occurrences of AA are linked to changes in our earth's environment. Also, she had never heard of a siblings both getting AA within the same month. The kids didn't go through any stress, nor were they around any environmental hazzards. Anyhow, that was what I learned. Take care!!

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Permalink Reply by Barbara Pastor on January 22, 2009 at 10:17am

Lynn, My daughter 12yr. just got diagnose with alopecia in 5 spots of her hair the size od a dime.Please tell me more about the iodine approach.

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Permalink Reply by Lynn AKA Mom of 2 w/AA on January 22, 2009 at 9:13pm

Hi there Barbara. Sorry to learn your daughter also has AA. You can purchase Iodides Tincture AKA decolorized Iodine for $3.99 per two ounce bottle at the Walmart Pharmacy. If it is not in stock, Walmart Pharmacy staff will order it for you, at your request. You dip a Q-tip into the bottle of Iodides tincture, then apply it to each spot. I applied it to the kids' spots every night for four weeks. After that, and currently, I apply it every other night. My daughter now has normal hair loss, and my son's spots are not growing larger. Iodides Tincture is a homepathic remedy; which means a doctor or dermatologist will not recommend nor discourage its use, since there has been no scentific research done. My father-in-law is in his 80s, and he, as well as others of the older generation believe "White Iodine" slang for Iodides TIncture, will help stop AA. We all know there is no cure, but I do believe treatments such as this will slow the progression of AA. My kids also willingly get injections every four weeks. Also, I know of kids who use a steriod cream, as well as the Iodides Tincture. Another mother stated her daughter's hairloss was significanly reduced after using Iodides Tincture in addition to a steriod cream. Write anytime with question. Best wishes.

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Permalink Reply by Lynn AKA Mom of 2 w/AA on February 12, 2009 at 4:42pm

I had talked the kids' dermatologist into waiving fees for drawing blood and completing paperwork, etc. I dropped off everything the dermatolgoist needed from the registry. Yesterday, I received a telephone call from his secretary, informing me that their office is not equipt to participate in the registry. Of course, I cannot take on the financial burden of hiring a dermatologist to complete the M.D. portion or draw my son's blood to participate in the registry. In light of these events, it is disappointing that my son will not be able to participate. I wonder how many other people this has happened to?

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