Comment by Eliza alisa abgail on November 3, 2011 at 11:10am

well good for you.good luck with it. action to date- its all your words above.That's all its ever been words.... No action or anyone really trying to change it. In medical field,naaf and others and even your charity...it never changes. And people wonder why no one is interested. I rather go and find my own cure.At least I know where my money goes. And that's the truth....

Comment by Bald and Fabulous AKA Terri on November 3, 2011 at 12:38pm

Having dealt with GAM on too many occasions I will continue to think of them as a cult, brainwashing their members. Yes I consider alopecia a disease, but in the grand scheme of things there is worse things that a person could be affected with. I have been living with alopecia for 29 yrs.....that is majority of my life. I congratulate alopecia in teaching me what is important in life and also teaching me to believe in my strength and confidence.

Comment by Eliza alisa abgail on November 3, 2011 at 10:32pm

sigh no one is against a cure here and I was one of those bullied. And those words did help.It kept me fighting and made sure I never hide from this condition. Bullies will also go after you even if you had hair. before I had my hair loss I was bullied and after.And you know what it made me stronger. You know what I would say the people with alopecia? You are the bigger person and beautiful.Don't let one person get you down.

Comment by Bald and Fabulous AKA Terri on November 3, 2011 at 11:03pm

Jayne.....I was bullied and I was taunted and yes it sucked. It kept me hiding for alot of years. But it was me that hid not alopecia that made me hide. I would tell all those children suffering bullying and hiding and feeling ashamed for looking different the same thing I tell those that look to me for guidance now. "Right now this minute it may not seem like it matters for me to tell you that this sucks but you do get thru this. You find the strength within you to pull through. You are indeed a beautiful, amazing and strong person and hair or the lack of it doesnt change that." To hate this disease, in my eyes is a waste of energy. Does alopecia care if you hate it....NO. So why waste precious energy hating something that you have no way of controlling. Fight for a cure...absolutely, 100%, no question. But dont do it cause of hatred, do it to further progressive. Use it as positive energy, not to say that it rob you from life. I use to think that alopecia rob me from doing so much in life, but reality is that it didnt. I stopped myself from doing the things I loved. I stopped myself from attending my friends celebrations and parties, including a best friends wedding. So no one would see me in a wig or with straggly hair. I stopped myself from going to horse shows and camping out on the grounds. Alopecia didnt stop those things, I did. Place blame where it truly lies. Enjoy live for all that it offers and dont let alopecia stop that

Comment by Bald and Fabulous AKA Terri on November 4, 2011 at 12:05am

I will always be grateful for this support community (Alopecia World) and its administrators. If it wasnt for them and the members and friends that I found here I would have never been able to believe in my strength. I feel that Alopecia World is my pay it forward. I will take what I have learned here, the good and bad points, and share it with anyone that will listen to me. I say good and bad points meaning that I truly believe everyone has their right to their opinion and what works for me, might not work for them, and vice versa. I feel its our duty to share what we take from here and spread the word. Educate our communities and schools so children walking into this disease will have the support and knowledge, that will arm them on their journey. So many of us here didnt have that in the beginning stages of our journey, we owe it to the next generation to help them.

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.

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 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 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 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!)

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