Also known as XP, is a rare inherited disease affecting both males and females. It causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, Xeroderma Pigmentosum can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of people with Xeroderma Pigmentosum also develop progressive neurological disease.
The Xeroderma Pigmentosum (XP) Family Support Group exists to improve the quality of life for people with XP and other diagnosed UV light conditions. The Xeroderma Pigmentosum Family support group strives to create awareness and educate the public about XP, as well as to raise funds to promote research, create collaborations with international XP partner organizations, and provide family grants for UV protective equipment and travel assistance for attending the annual XP national convention.
Only two weeks left to participate!
Send your drawings before 28 February 2021.
The Fondation René Touraine, through its Rare Skin Diseases Network, organizes the international art contest The story of my skin.
Our action is focused on improving care for patients with rare skin diseases. These diseases particularly affect children and put patients in a situation of great physical, psychological and social fragility. For us, drawing is a wonderful tool for expression and awareness raising.
This year, the theme is “Sensitive Skin”
For more information www.thestoryofmyskin.org
OPEN TO ALL!
It is with heavy hearts that XP Family Support would like to notify our families that Nina Markham has lost her fight with XP. Our thoughts and prayers are with her family and she will be missed. Nina was a wonderful and beloved person whose family has known XP Family Support for many years. Please turn your thoughts and prays to her family as they go through this tough time. Another star has been added to the night sky.
Peyton Madden shaking hands with Kansas Governor Laura Kelly as she signs Senate Bill 63 making it legal to apply window film to the front windshield of a vehicle. Great job Peyton for testifying and advocating for people with Xeroderma Pigmentosum and other sun sensitivities. #thisisXP #xpfsg
We encourage you to “like” and “share” this post on our Facebook page. Thank You! www.facebook.com/XPFSG
Coalition of Skin Diseases Luncheon
(attended by Michele Milota & Miranda Murphy)
The American Academy of Dermatology was founded in 1938. It is the largest, most influential and representative dermatology group in the United States. With a membership of more than 20,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists.
“MIDNIGHT SUN” AS REVIEWED BY TITANIUMAMY
The book Midnight Sun is told from the perspective of a girl named Katie who has Xeroderma Pigmentosum (XP). But, the story is greatly exaggerated. Katie says that even if the sun touches her skin, she will die. So she stays locked inside, only going out at night. Here are some parts of the book that I, as person who has XP, found amusing and disturbing.
Riley McCoy Named Homecoming Queen