Hi!
I am writing on behalf of my beautiful daughter Lulu. Her vitiligo began when she was 3 but it was some time before I realised it was spreading.
Lulu's 9 now and her vitiligo is no moderate it is severe. Although she is caucasian her skin is very olive so the white patches stand out. For the past few years it has got progressively worse and we have tried countless medications. Currently all we are using is Elidel.
She has dealt with it so well psychologically over the last few years and has started wearing shorts and t-shirts whereas she used to cover herself. But 2009 has bought a new school year and she is getting teased by a group of kids. I can not even describe to you my heartbreak. If there was anything I could do to carry this burden for her I would. Anyone who knows her does not even notice her vitiligo ... she is smart, witty and very very pretty.
I love her so much and I hope by joining this forum I will meet people who can update me on latest treatments and maybe there is another boy or girl Lulu could meet.
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Hi,
My daughter has had vitiligo since the age of 5. She is now almost 11. Her vitiligo is very severe. I know exactly how you feel. It would be wonderful for our daughters to meet/talk!! She doesn't know anyone else with vitiligo and I think it would be great for the girls to understand that there are other girls their age with vitiligo.
Hi Janet.... absolutely!
Lulu has pretty much taken over this site now.... I've been bumped off ,which is great, I don;t mind at all. I just check in occasionally.
Lulu is away today but she'll be keen to meet/talk to your daughter.
Where are you guys??
I think there will be things they can say to each other that they probably don't say to us.
I looks like she's handling her vitiligo much better than you guys (parents). She will have to struggle throughout her life with shallow people just like those kids, even if she had not vitiligo. Just support her and make sure she's fine emotionally, some counseling can help.
hey and welcome, i am also new here.. i have used protopic which is pretty much the same as elidel and have had great results on my face.. i barely have any vit on my face at all now and its not spreading. so keep using the elidel and have patience and it will most likely work.
Thanks Scott.
We went and got a new tube of elidel yesterday. Its a costly exercise here in Australia... I imagine its the same in the US.
Vit is such a bizarre thing.. there a loads of patches on Lulu which have disappeared over the years. But the past two months have seen it spread rapidly everywhere.
yea its pretty expensive over here also and yes vit is deffinetly a weird disease.. its completely unpredictable you dont know if it will spread or what. ive had it since i was 5 so pretty much my whole life and i still havnt figured it out.. but i think im at the point in my life where its stable and wont spread and also ive been getting alot of sun exposure in the summer and ive been reppiging all over my body where ive been in contact with the sun my elbows are halfway healed up in just 1 summer so im hoping to get more sun exposure this summer and maybe even take vitamins and stuff and ill just keep hoping and praying for a cure. but if they dont come out with a cure then its ok because ill just live with this disease like everyone else its alot better then havin cancer or something.. but newayz sorry for that big wall of text lol and i hope lulu repigments..
Replies
My daughter has had vitiligo since the age of 5. She is now almost 11. Her vitiligo is very severe. I know exactly how you feel. It would be wonderful for our daughters to meet/talk!! She doesn't know anyone else with vitiligo and I think it would be great for the girls to understand that there are other girls their age with vitiligo.
Lulu has pretty much taken over this site now.... I've been bumped off ,which is great, I don;t mind at all. I just check in occasionally.
Lulu is away today but she'll be keen to meet/talk to your daughter.
Where are you guys??
I think there will be things they can say to each other that they probably don't say to us.
Scott
We went and got a new tube of elidel yesterday. Its a costly exercise here in Australia... I imagine its the same in the US.
Vit is such a bizarre thing.. there a loads of patches on Lulu which have disappeared over the years. But the past two months have seen it spread rapidly everywhere.
Scott