I am all for acceptance of our particular disorder. And, of course, it's unbelievably important to educate the world about alopecia. But it is absurd to me that promising research takes place, has promising results, and is then abandoned. And alternative treatments, that seem to show some positive results with other auto-immune disorders, are all but ignored for alopecia.
I just can't get behind the idea that there is really nothing wrong with people who have alopecia; that what we really have is just a cosmetic condition where we lose our hair. No biggie. Hey, the MPB fellows have been dealing with this same thing forever. But I do think it is different. The latest theory is that my body thinks that my hair is a disease. And my immune system is attacking it. A rogue immune system is not merely cosmetic, regardless of whether the resulting symptoms are physically painful or not.
I just can't abide that the party line for us alopecians is to bolster up our self-esteem, learn to accept ourselves as we are, and then go forth to educate the masses on how to accept and understand us as well. I think (and I am aware that this is just my opinion) that there is a kind of collective guilt and shame on the part of people with alopecia that leads our community to think that demanding more funding for alopecia research and treatment options is somehow selfish and inappropriate. That the time and money should be spent on other diseases where people are actually suffering, hurting and dying.
Hey, we and our loved ones all live with the same possibilities of those other diseases. So, of course, we want them funded. But I believe that we have as much right to fight (loudly and persistently) for solutions to our problems as anyone. There are other "cosmetic" or "lifestyle" disorders that get serious-crazy funding. The psoriasis camp, for one, is great about pushing for treatments and cures. And don't try to tell me that, for example, erectile dysfunction is a life or death matter. A serious problem, no question. and a most pressing problem for those who suffer from it. But a child with an out-of-whack immune system that makes them bald at age 7 is no less of a pressing problem, and one with certainly no less suffering attatched.