Hi, I,ve only just found this site and thought I'd leave a message. My mum died from XP in 1993 aged 58. She was only diagnosed with XP in about her mid 30's. We were all told that although myself and my 2 sisters carried the faulty gene and would pass this onto our children, that unless our partners had the gene or they had a history of skin cancer in their family then our children would be ok. This has so far proven to be the case.
My mum had 4 siblings, and out of these 5 children 3 had XP, Mum was the worse. So far only my mum has passed away, both my uncles are still with us and are in there 80,s. We were told that this was normal. I would love to here from anyone to clarify what we have been told.
Thanks

Hi i think its great what you doing to help kids with XP. i have XP and we have no support in South Africa. nice to know there are people who care.

I am a mother of 4 children. 3 of them have xp. sadly my oldest passed away in 2002. I have 2 children with xp that are still living and a 16 year old that does not have xp. we are native americans and are of the navajo tribe.

Love your website. I have a 14 year old daughter who has XP. I believe we attended the same session as Sandra Webb in 2000 at Camp Sundown. At that time my daughter Jenny was 5 and my son was 7. We had such a memorable time and surprisingly as young as my children were they still remembered some of the other children that attended. Unfortunately, my son just recently passed away at the age of 15. He did not have XP. Losing a child is extremely difficult. When I think about my daughter Jenny and what the future may hold for her, I cannot help but cry. Will she live to be old or will I lose another child?
Someday I hope to visit Camp Sundown again, but a bigger wish would be to attend the camp that your support group holds. My daughter always asks can we go to England? (I wish)

Hi !

Me and a partner is doing a biology project on this disease, and this site was extremely useful and interesting! Thank you for all of the Xeroderma Pigmentosum information! :)

Welcome to the new XPSG Website.
This is now the 4th generation of the XP Support Group Website.
We hope you find this an informative and useful resource.