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Permalink Reply by Milka Stepien on October 12, 2012 at 7:38am

I think the major thing to remember is that even though it is not as serious as many other much worse diseases in the physical sense, it can have a lasting psycological effect. While some of us deal with it quite well or very well, there are others who go through intense bouts of depression, social phobia, and deal with such issues as not being accepted by friends, family, loved ones, the workplace, bullying at school, etc. It does hit one's self-esteem, because of the type of images of 'normality" and 'beauty' we encounter on a daily basis. I've heard stories of children with AA with home-schooling because they could not function within the school system, people being fired or not hired, a girl who was to afraid to go out because she would have to show herself. I went through a phase like that, when I had to force myself to leave the house. Fortunately I got through it, but I remember what a challenge it was to go to uni and have people looking at me (even if their gazes were completely innocent) So while it needs to be kept in perspective (i.e. - there are many who are worse off), we should also try to act for those who have real, tangible negative effects within their lives!

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Permalink Reply by Silk on October 12, 2012 at 9:14am

Thank you for the explanation, Cindie. I feel sorry that you and your daughter have to go through all those health issues, not mentioning institutional bureaucracy on top of that. Alopecia is an issue quite different in nature, as Milka brilliantly described, it is more psychological than physical, though life limitations can be profound for some people with hair loss. That is why it is not easy to document related impairments and achieve recognition. Personally, I don't believe the woman I mentioned in my first post can get a non-working disability status. However, there are other categories to accommodate facial disfigurements. As I brought about before, while recognized as disabled, one might claim for public subsidies to cower prothesis (wigs), which become an important issue for people wearing wigs on daily basis, or for special working/study conditions (home schooling was mentioned before)

In Sweden, as far as I know, this is somehow arranged even though the amount of financial support vary dramatically across the country. Alopecia patients organization - Alopeciförbundet - has been quite active during last years trying to obtain status of disability organization. Probably, that would bring some change for people with hair loss. Have you happened to be in touch with them, Renée? It is the case, unfortunately, that alopecia is often trivialized by medical practitioners

Another dimension of such a status is anti-discrimination protection guaranteed in US, as I sited, by ADA and also worldwide by WHO's decisions. It would be interesting and important to learn if/how it works in American practice.

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Permalink Reply by Cindie on October 15, 2012 at 10:09am

I had the beginnings of alopecia as a child.....I am now 59 years old, so I have been dealing with the psychological aspects of it for at least 50 yers. I am glad that in more "civilized" (European) countries, it is recognized for the disease that it is.

Even here in the US, most insurances will not cover a "full cranial prothesis". Because it is considered a cosmetic issue.

As for the ADA, it is almost laughable.....there are so many Americans with disabilities that attempt to invoke the law at their workplace who end up not working.....because it is so much easier to hire someone who doesn't have all the "baggage", as Americans so callously call problems.

Recently in my state, the Governor was annoyed by people in wheelchairs who were coming to his office in the Capitol. So he just banned anyone in wheelchairs accessing the second level....and has the Capitol Police to enforce it. Wheelchair bound individuals have been arrested for "trespassing." So I don't holda lot of faith in "anti-discrimination protections" in the US.

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