Comment

Comment by Karli R. on November 15, 2011 at 1:45pm

Jayne I agree 100%! I think that this needs more funding. There have been genetic breakthroughs over the years and we want answers about these autoimmune diseases! My mother has lupus. I have AA. No one else in my family has alopecia. My sister, grandmother, aunt, and great aunt have thyroid conditions. What is the link? We want answers!!

As far as I can tell, we are guinea pigs. Shouldn't the guinea pig stage be over by now!?

Comment by emmettbrown on November 15, 2011 at 8:01am

Go Jayne! Passionate people are what move the world (and make it worth living)! Seeing how screwed up this situation is at present is the key to transforming it and making it better. (Will respond to your earlier message later today when I have more time...) - Bill

Comment by LilyBell*Murphy'sLawLuvsMe on November 14, 2011 at 7:25pm

Also, I would like to say that while some people do seem to adjust to hair loss - some never do and how many may have become so depressed they committed suicide. Oh, I know, nobody likes to really think about that - but I have read far too many blogs and posts from people thinking of doing exactly that to know that thought does cross many minds. Some I am sure do commit suicide from the depression brought on by hair loss but I doubt THAT is listed on their death certificate - just suicide. Nobody should have to become strong due to hair loss - in my opinion, hair loss of all types should be able to be researched and resolved and properly funded. Again that being said, I think independent research will be the key as gov't funds will mostly go to diseases that are fatal.

Comment by Lili on November 14, 2011 at 2:34am

How come they funded botox, was that necessary? I think they need to come up with a cure for all hair loss by now, it's 2011 already. It makes me angry that the drug companies lie to people with hair loss and make them believe treaments are viable- they're not. I think sticking needles of steroids (?) all over someone's head sounds kinda primitive. The thought of a child enduring that is awful, imo. And pattern baldness treatments are only tested on men and I think only work on men, and only so much.

Comment by emmettbrown on November 13, 2011 at 8:14pm

Hi Jayne,

I totally agree - it's crazy how much the patient needs to play the role of doctor to figure these chronic illnesses out. Makes you wonder what in the world med schools are teaching them. Kudos for jumping in and trying to make this system function better. (That's my goal, too - just trying to share my experience and save some heartache if I can.)

I checked out the GAM site - I love the spirit of the project and it looks like you've got some great content already (nice job on the writing, whoever composed it). Once the Info Center tab gets populated with content, this will be a very useful resource for patients. In fact, until you can raise the funds to conduct your own research, you could become a clearinghouse for all the research that already exists out there. And some of your volunteers could attempt to put it into context or develop versions for the lay reader (PubMed studies are usually hard to decipher - they're written for scientists/doctors.) Offering this kind of info would probably attract more visitors and help your Google rankings, too.

Have you developed a list of specific research projects you would like to undertake? Perhaps you can use your AA survey data to help define these objectives. For instance, if the survey data shows a large percentage of people utilize a given alternative treatment, but there is no study to back up its efficacy, this could become a primary research objective.

(BTW, two compounds that I would like to see studied are Wobenzym, an enzyme complex that is purported to neutralize "circulating immune complexes", and bovine colostrum, purported to resentize the thymus gland so that it can tell the difference between a foreign invader and your hair :) -- both were essential in the regimen I used to regrow my hair (my body didn't tolerate the dermatologist's topical steroids at all so I took a different approach - he was amazed at the results but said he couldn't recommend them to any of his patients, oh well.)

I have no clue what it costs to design, conduct and analyze a research study. Do you have some folks on your team with this background? If so, adding their names and backgrounds to the site will help folks feel more comfortable donating money to your organization.

Lastly, have you contacted the National Alopecia Areata Foundation? They're supposed to be working hard to find a cure - not sure if they're open to help in this area or would be open to some sort of collaboration. Of course, if they were effective in this area, our doctors would be better equipped than they are...

Regards,
Bill (aka, EmmettBrown - think "Back to the Future" :))

Comment by emmettbrown on November 13, 2011 at 2:26pm

One thing to keep in mind is that alopecia areata, totalis and universalis are autoimmune disorders. This puts them in the same camp as a slew of disorders such as Chron's disease, celiac disease, Lupus, vitiligo, Graves disease, MS, et al. While there may be a lack of funding for research into alopecia specifically, there is a body of research slowly being built for other manifestations of autoimmune that could be applicable. In fact, there's an entire research center dedicated to autoimmune disorders at Johns Hopkins. In these days of Government budget cuts, it's likely that attracting dollars to research alopecia alone will be a long, uphill battle. But examining the research that's being conducted into other autoimmune disorders may prove fruitful.

In my own case, I didn't know I had Celiac disease till I went through a bout of alopecia areata. My dermotologist didn't look into my diet or make the connection, but at about the same time, my mother had genetic testing done for Celiac and it turned out she has it. She also has Lupus and is always complaining of losing hair (not as dramatically as my case, though). I went off gluten and dairy and not only did my hair come back, but it solved a bunch of other health issues I was having as well (anxiety, oily skin, gas, etc.). So often with autoimmune, you don't just have one spectrum of symptoms, you have several.

One other thought -- it may take awhile for science to find a cure for autoimmune disorders. But right here at Alopecia World, this community is building quite a base of anecdotal evidence. It may not be peer-reviewed, evidence-based or will ever get published in a journal, but anecdotal evidence is still evidence. This site really is an incredible, exer-expanding, open-source research resource for those suffering with alopecia. Yay Alopecia World! :)

p.s. I think both the self-esteem building, emotional support and the hard, cold research both have an important role to play for people suffering with alopecia -- thanks to both Terri and Jayne for your obvious passion into providing support for these issues. (You rock!)

Comment by Nachiketa Sanyal on November 8, 2011 at 9:11am

I fail to understand the heated controversy. GAM is simply an organization dedicated to channelizing more funding for finding possible treatments for AA in specific and autoimmunity disorders in general. What's all these cult allegations about??

Comment by BTB (John) on November 8, 2011 at 6:30am

If my wife is resigned to her Alopecia that's her choice not mine or anyone else's especially those claiming a cure for a disease where no cure now exists. Lotions potions and ratlling the beads do nothing for Alopecia. Let all find there own comfortable place and don't go in there with unproven claims, cures, creams. My wife is complete as,she and I support her for being so and many other members don't want to be hassled wirh guru learning it's just upset all thatn are bullied by false gurus claims

Comment by Eliza alisa abgail on November 5, 2011 at 2:49am

both situations he will do the same thing..... refer you to the psychologist or tell you there is no cure and there is nothing I can do for you unless you want steroids. Doctors don't decide want conditions get researched............ They only diagnose you....

Comment by Pat on November 5, 2011 at 1:44am

The dear doc would refer you to a psychologist, write a prescription and that would be the end of that. he is not going in to bat for you, he is inundated with patients on a daily basis. He will feel sorry for you end of story. Auto immune diseases are so complex, but I really believe once one is understood it will be the gateway to understanding the rest and the we will have a chance of a cure - maybe. In the meantime we can raise awareness and learn to live with it the best we can.

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