Comment

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 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 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 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 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 Eliza alisa abgail on November 3, 2011 at 5:20am

how can one be sure that all funding will go to alopecia research and not his pocket? How will you prove that he is his intentions are really good? where is his research on alopecia? so far its been talk.... I want action..... Not words.

Comment by LilyBell*Murphy'sLawLuvsMe on November 2, 2011 at 10:16pm

OK I can see the point but then why almost 'taunt' people that he has a cure that worked for him but will not share it - it is almost how it feels. He should in my opinion remove that as the focus of his website and focus on raising money for a cause he knows needs to be addressed and cured. His whole blog about how he was AU for so many years and in just a few weeks was able to cure it should be done away with - he needs to focus on the fact that he is trying to raise awareness to demand a cure - I think he would have a much better and broad ranging acceptance if he did so.

Comment by LilyBell*Murphy'sLawLuvsMe on November 2, 2011 at 6:09pm

Jayne, I do think he has a point about independent research, and funding for it - that being said the longer he waits to publish what he believed helped him cure his AU - the more he and his organization will be thought to be a scam. And yes, I do think there is a whole industry that would be jobless if a cure or effective treatments were found for hair loss - that is why I think drug companies will never find a cure only treatments - and I am fine with that - I just want my hair back.

Comment by Nachiketa Sanyal on November 1, 2011 at 12:32pm

Ok.. I just wish GAM all the bet with their research..
It'll be great if they can manage to come up with something.

Comment by Eliza alisa abgail on November 1, 2011 at 11:43am

well.... you have the choices in your life whether you have hair or not.... whether you do nothing or something has to come from you.Its your life. Doctors are people just like you if you wanted to be a doctor you could be one and cure this condition. If you want to change the world then change it... I never resigned my fate to just sitting down. Nor will I complain about how hard my life is with alopecia. And I WILL change the world and I am going to do it. My way

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page