Posted by Carl R. Manley on September 23, 2010 at 2:09am
On several occassions I have been places with my kids and people have made ignorant comments about me because of my vitiligo and usually I just pay people no mind because I have been dealing with this since about 1983. But when I'm out with my two oldest daughters ages 18 and 20 they take it very personal when they hear somebody talk about me. I guess because the love they have for me they feel protective of me and feel the need to lash out at people who make negative comments towards me because of my vitiligo, especially my oldest daughter my first born, we are very close and from time to time I have had to stop her from wanting to beat others up for saying negative comments about my vitiligo, so I tell her just don't worry about it people are going to be rude and make all kinds of negative comments about me and others with vitiligo you just have to ignore it like I have done all this time. I can't blame my daughter for feeling so protective of me because of that father/daughter bond we share but I told her there's no need for her to be like that and risk going to jail or something like aggravated assualt, she has since calmed down a lot after I had a long talk with her but it's amazing how a childs love for their parents shows no limits and I'm blessed to have such loving children who lookout for me
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Carl: Glad to know you have such a nice family. Continue your parenting and mentoring. They need your guidance and maturity. Your points make so much sense. Absolutely. Speaking for myself, I am reading your notes, and trying to digest and learn because, we have a long journey ahead of ourselves.
This whole vit disorder is so special and interesting. I know people (including some in my OWN family) who can collapse and (possibly even die) anytime, any second, due to other medical conditions (non vitiligo). Some of them reasonably young too. Yet, they drive cars, travel extensively, go on cruises etc. Second Eye does NOT even know. That's the KEY point. Plus, many of them spend a fortune for medical treatment. In some cases, other family members take the burden of assisting them. Also, known treatment is available for several of these med conditions. Pharma companies are pouring billions of $ in further research.
On the other hand, Vit is NOT life threatening, NOT contagious, does NOT cost huge fortune for treatment. Many do NOT even worry about treatment. Plus, there is NO known established cure. People with vit, are very normal, healthy, handsome/beautiful and all other good stuff. I can go on and on listing dozens of other points. Yet, the mere lack of melanin in their skin, has the huge potential to draw attention in terms of stares, comments, enquiries. All of these can result in huge stress.. I am thinking, hey, this is not fair. Do I have a point ?
Carl R. Manley > Nathan YetiSeptember 23, 2010 at 6:18am
Nathan I loved your reply and I see you and I think along the same lines as they say great minds think a like I often tell people that the reason why there's not so much emphasis on a vitiligo cure is because it's not contagious or life threating like some diseases but I would say the problem in much more than cosmetic because of the emotion concerns that vitiligo cause, and yes it's not fair that we with vitiligo have to live like this but I guess we can still be thankful because there's a lot of other stuff out there much worse than vitiligo
Replies
This whole vit disorder is so special and interesting. I know people (including some in my OWN family) who can collapse and (possibly even die) anytime, any second, due to other medical conditions (non vitiligo). Some of them reasonably young too. Yet, they drive cars, travel extensively, go on cruises etc. Second Eye does NOT even know. That's the KEY point. Plus, many of them spend a fortune for medical treatment. In some cases, other family members take the burden of assisting them. Also, known treatment is available for several of these med conditions. Pharma companies are pouring billions of $ in further research.
On the other hand, Vit is NOT life threatening, NOT contagious, does NOT cost huge fortune for treatment. Many do NOT even worry about treatment. Plus, there is NO known established cure. People with vit, are very normal, healthy, handsome/beautiful and all other good stuff. I can go on and on listing dozens of other points. Yet, the mere lack of melanin in their skin, has the huge potential to draw attention in terms of stares, comments, enquiries. All of these can result in huge stress.. I am thinking, hey, this is not fair. Do I have a point ?
Nathan I loved your reply and I see you and I think along the same lines as they say great minds think a like I often tell people that the reason why there's not so much emphasis on a vitiligo cure is because it's not contagious or life threating like some diseases but I would say the problem in much more than cosmetic because of the emotion concerns that vitiligo cause, and yes it's not fair that we with vitiligo have to live like this but I guess we can still be thankful because there's a lot of other stuff out there much worse than vitiligo