Posted by Miguel Meza on October 14, 2009 at 5:42pm
for creating this web for our VITILIGANS community which has really helped me in my life =) i would have never met anyone with Vitiligo if it wasn't for u steve and i want to thx u very much for this..it has helped me emotionally alot talking to the people that i feel so close 2 when they are far!..really awesome =))
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Hi Miguel, I, too, am so grateful to Steve for this new network of friends. Although I am completely depigmented by vitiligo now, I did go through 50+ years of increasing white patches of vitiligo and then toward the latter years, just brown patches of pigment left on my white (I like to say 'fair') skin, which was also very troubling. I had no support during those hard times, like I do now. Vitiligo took a lot of my self worth for many years, but I have grieved all those times with professional counselors and support groups. I am so very grateful to be on the other side of my life, as it is now, and I love my friends with vitiligo who helped me reach this level of acceptance. I will stay with the vitiligo communities as long as I am able with the hopes of hearing someday a prevention or cure for vitiligo has been found and available for you and for my decendants if needed.
I am keeping hope alive and counting any and all of my blessings,
Patty
I also want to thank Steve for starting this up this Ning. My Vitiligo has also been spreading on my face more and as a result, I have been needing the support that we have here more than ever. Every time I visit, I feel accepted and as though I am around people who really understand the psychological aspects of having this disease. I read people posts, reply, give and receive support. I no longer feel that I am alone in this struggle. Lately, this is my number one social network!!
Miguel Meza > Nelly CardinaleOctober 15, 2009 at 5:38pm
Nelly ur soo right in waht u feel thats how i feel thats why i took time 2 post this =)
I can honestly say the same thing--this network has helped me as well. I just don't feel so alone in dealing with my Vitiligo, which is significantly affecting my face in the last few months. I talk about the network in almost every presentation I give in my work (which is about the use of social media in education) as an example of how social networking can change our lives.
I think this is great too! I have never met anybody face to face (besides me!) who has vitiligo, so it's such a relief to talk to all of you nice normal folks out there.
What gets me is that NONE of my educated friends have never even heard of it! I don't get it.
And when my doctor told me I had it and I was shocked, he said, "Don't look so sad. The last person in here had melanoma," and he walked out the door. Most doctors don't seem interested in vitiligo. There's no magic pill or surgery for it and it is not a cutting edge disease that's going to win anyone a big scientific honor.
Replies
I am keeping hope alive and counting any and all of my blessings,
Patty
Thanks to you, Miguel!
I think this is great too! I have never met anybody face to face (besides me!) who has vitiligo, so it's such a relief to talk to all of you nice normal folks out there.
What gets me is that NONE of my educated friends have never even heard of it! I don't get it.
And when my doctor told me I had it and I was shocked, he said, "Don't look so sad. The last person in here had melanoma," and he walked out the door. Most doctors don't seem interested in vitiligo. There's no magic pill or surgery for it and it is not a cutting edge disease that's going to win anyone a big scientific honor.
Betsy