Personally, I can deal with anything. However, it hurts me when my kids have to explain or deal with my Vitiligo with other kids. Share your stories (I know some may be tear jerkers).
You need to be a member of Vitiligo Friends to add comments!
This is a very important discussion thread, very near and dear to my heart. I had been less active in this forum this year. Your post invited me to come back and contrinute. I shard our story multiple times during the years 2008 and 2009.
My 10 year old child has Vit. We believe that, vaccination induced vit to our child. Yes, it can happen per research. To the extent we know, Vit never exists in my family or my wife's family. We are somewhat at peace knowing that, Vit is a non-life threatening. However, due to some other reason, explained below, we do go thru up and downs. Vit took away quite a bit from my family. IT tooks us 3 plus years to come to terms. This condition is scary or our family because, we hail from India. Due to our CULTURAL ROOTS, we go thru arranged marriages. Some of my comments may hurt the sentiments of some, esepcially from India. Hence, my apologies in advance. Based on what I know, it is not easy to find a good marraige alliance for girls with vit conditions. If I were to pick, 90% of boys and their family members, will stay awy from girls with any flaws in general. I am very positive that, if VIT is readily visitble, it will not come across very well during the marriage alliance process. Because, on the boy's side, family members (brothers, sisters, uncles, aunts, some cases even neighbors, TRUE !) have to give green signal to the girl. It does happen in many familites. It is quite frustrating for the girls side.
I will agree that India today is much different from what it used to be 30 years or 20 years ago. As parents, me and my wife are at peace because there quite a number of smart and positive thinking, among the NEW youth.
In summary, different parents react differently to their Kids Vit. Many a time, I thought, why did not I get this, why my child ? Me and my wife chose to BELIEVE in medicine. Hence, we scavenged the whole world from doctors, to research centers, to labs etc. We went to 3 different dermatologists. I wish this site existed in the year 2007. Finally, we found the right Derm. Our faith worked. Since we found Vit in the very initial stages, the comibination of Derm's eyes, his knowledge and the magic of Protopic and Halobestol, we are were able to GET RID of vit on face, knees, elbows, back, stomach permanently. Ankle took almost ONE full year, 95% removed, still fighting with 5%. Toes is taking long time.
Derm tells us that, it is tough for Vit to go away if there are NO hair folecules. Because they are the conduits of pigments.
My wife, does not allow me to take pictures and hence, I cannot show before and after progress. to keep our mental frame of mind intact, sometimes, we do pray the vitilogo god above us. In Indian Culture, it is SUN.
I agree an important topic. So far my children are not showing any signs of it but after having vitiligo for 30 years which is extensive and was still spreading I have started taking supplements, followed vegan diet and use pro topic and sunlight as much as i can. Now after 2 months all my areas have extensive freckling and so now I feel more in control even though I have a lot more freckles to get before I look normal. It gives me hope that if my daughters do develop it I can do something about it!
Thought I should point out this Q&A from the Vitiligo Society.
Q. How do vitiligo genes get passed on?
Genes are inherited in a random fashion from both parents, so only sometimes will the vitiligo genes come together in the same person. Those who do not inherit a complete set of vitiligo genes are unlikely to develop the disorder. Those people who do inherit a sufficient set may also need some other factor to trigger the vitiligo patches to appear. In this way vitiligo genes can pass through several generations of a family without anyone actually developing vitiligo.
I met someone here online, and i got to find that her vitiligo was inherited from her grandmother. But, that didnt bother her at all she had so much praise for, respect towards her granny.Her getting vitiligo from her grany didnt matter at all. Her granny was full of love and thats what she was proud of her.
I was so glad to know this, infact it helped me to clear out the mental block of how my kids wld precive my vitiligo in their parents in future. Provided parents are full of affection and love, kids will always ever want from parents is love, affection and protection. Once, they get these, they will be able to cope up with the world. Infact, they may also help towards eradicating Vitiligo who knows? !? !
And, can any person get best things in the world in one life time ?? I dont think its possible. So, its part of collective karma of family to go thru certain common pains and suffereing. As in case, my dad and mom, are still having trouble in dealing with my vitligo in front of society. Their trails and turbulance makes me worried, but its part of their karma to suffer due to my vitiligo. I am at peace with vitiligo, and they are still learning to to let go my pain, they are carrying due to attachment. Not only them, even my uncles, aunts and cousins all are dealing with this. They dont know how to cope up wit. They all think I am suffering. But, actually I am leading a quite happy and content life.
my vitiligo combined with the fact that in about 30-40 years planet earth will be reduced to a giant ball of unbreathable gacious crap = the reason i will never EVER have children.
No one should have to go through this, and i would never risk putting a child through it.
Alex - Not to go in left field with this topic.... although I can completely relate to your sentiment about having kids in this messed up world...I'd be remised if I didn't say that my kids are the reason I cope with this world. Since I have been blessed with them, so many things in life that I thought was important have become very insignificant. Heck, my kids might be the leaders that save this planet. I do have one bit of unsolicited advice for you if you want it: Keep your mind open to new views; and if you are ever in the position to raise a child, adopt one.
My older daughter has a tiny spot on her leg. when she was younger i asked her if it will bother her if she gets it? she said as long as i get to keep my hair. lol.... now she is muchmore consious of it. but i know she'll be fine she has such a great spirit. my youngest on the other hand she doesn't quite understand it, the other day i was going to leave the house with a tank top on and she said momma but everyone will see your vitiligo. i try to explain to her and one day i'm sure she will be fine with it also. as far as their friends they don't say much about it.
Replies
Jeff:
This is a very important discussion thread, very near and dear to my heart. I had been less active in this forum this year. Your post invited me to come back and contrinute. I shard our story multiple times during the years 2008 and 2009.
My 10 year old child has Vit. We believe that, vaccination induced vit to our child. Yes, it can happen per research. To the extent we know, Vit never exists in my family or my wife's family. We are somewhat at peace knowing that, Vit is a non-life threatening. However, due to some other reason, explained below, we do go thru up and downs. Vit took away quite a bit from my family. IT tooks us 3 plus years to come to terms. This condition is scary or our family because, we hail from India. Due to our CULTURAL ROOTS, we go thru arranged marriages. Some of my comments may hurt the sentiments of some, esepcially from India. Hence, my apologies in advance. Based on what I know, it is not easy to find a good marraige alliance for girls with vit conditions. If I were to pick, 90% of boys and their family members, will stay awy from girls with any flaws in general. I am very positive that, if VIT is readily visitble, it will not come across very well during the marriage alliance process. Because, on the boy's side, family members (brothers, sisters, uncles, aunts, some cases even neighbors, TRUE !) have to give green signal to the girl. It does happen in many familites. It is quite frustrating for the girls side.
I will agree that India today is much different from what it used to be 30 years or 20 years ago. As parents, me and my wife are at peace because there quite a number of smart and positive thinking, among the NEW youth.
In summary, different parents react differently to their Kids Vit. Many a time, I thought, why did not I get this, why my child ? Me and my wife chose to BELIEVE in medicine. Hence, we scavenged the whole world from doctors, to research centers, to labs etc. We went to 3 different dermatologists. I wish this site existed in the year 2007. Finally, we found the right Derm. Our faith worked. Since we found Vit in the very initial stages, the comibination of Derm's eyes, his knowledge and the magic of Protopic and Halobestol, we are were able to GET RID of vit on face, knees, elbows, back, stomach permanently. Ankle took almost ONE full year, 95% removed, still fighting with 5%. Toes is taking long time.
Derm tells us that, it is tough for Vit to go away if there are NO hair folecules. Because they are the conduits of pigments.
My wife, does not allow me to take pictures and hence, I cannot show before and after progress. to keep our mental frame of mind intact, sometimes, we do pray the vitilogo god above us. In Indian Culture, it is SUN.
Thanks again for starting this discussion thread.
Q. How do vitiligo genes get passed on?
Genes are inherited in a random fashion from both parents, so only sometimes will the vitiligo genes come together in the same person. Those who do not inherit a complete set of vitiligo genes are unlikely to develop the disorder. Those people who do inherit a sufficient set may also need some other factor to trigger the vitiligo patches to appear. In this way vitiligo genes can pass through several generations of a family without anyone actually developing vitiligo.
I met someone here online, and i got to find that her vitiligo was inherited from her grandmother. But, that didnt bother her at all she had so much praise for, respect towards her granny.Her getting vitiligo from her grany didnt matter at all. Her granny was full of love and thats what she was proud of her.
I was so glad to know this, infact it helped me to clear out the mental block of how my kids wld precive my vitiligo in their parents in future. Provided parents are full of affection and love, kids will always ever want from parents is love, affection and protection. Once, they get these, they will be able to cope up with the world. Infact, they may also help towards eradicating Vitiligo who knows? !? !
And, can any person get best things in the world in one life time ?? I dont think its possible. So, its part of collective karma of family to go thru certain common pains and suffereing. As in case, my dad and mom, are still having trouble in dealing with my vitligo in front of society. Their trails and turbulance makes me worried, but its part of their karma to suffer due to my vitiligo. I am at peace with vitiligo, and they are still learning to to let go my pain, they are carrying due to attachment. Not only them, even my uncles, aunts and cousins all are dealing with this. They dont know how to cope up wit. They all think I am suffering. But, actually I am leading a quite happy and content life.
Cheers,
Santhosh Shekar
No one should have to go through this, and i would never risk putting a child through it.