The National Alopecia Registry: To Track Persons With AA or Find a Cure?

Soooooo, I filled out all of the paperwork for the registry for both kids and mailed it in. Next, I received emails regarding taking each kid to San Francisco for blood work, etc. I had a few questions and emailed the registry. It was very frusterating when I kept getting generic replies thanking me individually for signing up for the registry. Then after many email attempts, finally I learned that I would have to pull each kid out of school to go to San Francisco and have the blood work done. This is impossible. It's puzzling how our research monies donated are spent at the registry. Has anyone else had a frusterating time trying to work with the registry?

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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.
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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