XERODERMA: The Brazilian Society of Dermatology visited the population of Araras, town of Goiás State. The region has the highest global rate - 1 per 40 inhabitants - of a rare genetic disorder called Xeroderma Pegmentosum. Have a look: http://bit.ly/1PIYJa0 (Available only in portuguese)

SUBSCRIBE to MIRMONT PICTURES | http://bit.ly/2tebRm6

Lizzie Tenney suffers from the rare skin disorder Xeroderma Pigmentosum; meaning she burns and blisters like an extreme sunburn after being exposed to the sun for just minutes. There are only around 300 diagnosed cases of XP in the United States, making Lizzie truly one in a million.

Xeroderma Pigmentosum is an uncommon degenerative disease that causes the skin to be unable to repair its own DNA once exposed to and damaged by the sunlight’s ultraviolet (UV) rays, often resulting in skin cancer, neurological problems, and developmental delays.

In Lizzie’s case, she has had surgery for skin cancer 43 times in her 22 years. The 22-year-old from Highland, Utah, uses a special meter that measures the level of UV rays and tells her when it is safe to go outside, or how much protective gear to wear.

Director Sohrab Mirmont
Cinematographer Sohrab Mirmont
Producers Camile Rocha-Keys and Ruby Coote
Gaffer Mario DeAngelis
B-unit Camera Operator Mario DeAngelis
Editor Josh Halil

Produced for Barcroft Media, UK.

Link to original video via Barcroft TV: https://www.youtube.com/watch?v=b7oFEblHKyc&t=1s

See more from Mirmont Pictures at www.mirmont.net.

Simply inspiring.

SUBSCRIBE to Truly: http://bit.ly/Oc61Hj

SISTERS Amielle, 8, and Taya, 3 from Sydney, Australia both have Xeroderma Pigmentosum, a very rare condition that means if the girls are exposed to sunlight their skin can be burnt very badly. Amielle’s first burn happened when she was just three and a half months old. Initially doctors said that she just had sensitive skin and it wasn’t until Amielle was 7 that she was finally diagnosed with XP. After the diagnosis the family took a DNA test and discovered that Taya also has the rare condition. The girl’s parents, Nick and Yvette have to take a number of safety measures when the sisters go outside. To ensure they are not exposed to any UV light at all the girls have to wear a thick layer of sunblock, gloves and a protective visor before leaving the house. Nick and Yvette hope to raise money via GoFundMe to build a covered play area in their garden so the girls can have fun outside freely. Due to their condition Amielle and Taya can only visit the beach at night to be completely safe. Truly visited the family during one of their evening trips to their local beach to see them all enjoy the seaside together.

Support Amielle and Taya here: https://www.gofundme.com/f/hel....p-ami-taya-walker-pl

Videographer: Chris Butle
Producers: Tom Jones, Yasmin Walker
Editor: Paul Zeller

Truly is on TikTok! https://www.tiktok.com/@truly_show

Now you can watch our videos in Spanish!: http://bit.ly/Suscribirse_truly_ES

Click here to follow your favourite Truly shows on Instagram!
Truly - https://www.instagram.com/trulyshow
Born Different - https://www.instagram.com/borndifferentshow/
Shake My Beauty - https://www.instagram.com/shakemybeauty/
Hooked On The Look - https://www.instagram.com/hookedonthelookshow/
Love Don't Judge - https://www.instagram.com/lovedontjudgeshow/
Beastly - https://www.instagram.com/beastlyshow/
Ridiculous Rides - https://www.instagram.com/ridiculousridesshow/
Dog Dynasty - https://www.instagram.com/dogdynastyshow/

For more amazing content, click here!
Beastly: https://www.youtube.com/channe....l/UC9LxuffQCm_Z4KBCo
Barcroft Cars: https://www.youtube.com/user/BarcroftCars/featured

Imagine never once having the sun shine on your face or being forced to hide in the shadows because stepping into the light could kill you. That’s life for a bunch of kids with an extremely rare skin condition. It’s called xeroderma pigmentosum or XP, chances are you’ve never heard of it. I certainly hadn’t, but I’m glad I did. I’ve just spent an incredible, and yes, inspiring week with the kids they call ‘moon children’. When the sun goes down they come out to play, and these guys love company- almost as much as they love the camera.

WATCH more of 60 Minutes Australia: https://www.60minutes.com.au
LIKE 60 Minutes Australia on Facebook: https://www.facebook.com/60Minutes9
FOLLOW 60 Minutes Australia on Twitter: https://twitter.com/60Mins
FOLLOW 60 Minutes Australia on Instagram: https://www.instagram.com/60minutes9

For forty years, 60 Minutes have been telling Australians the world’s greatest stories. Tales that changed history, our nation and our lives. Reporters Liz Hayes, Allison Langdon, Tara Brown, Charles Wooley, Liam Bartlett and Tom Steinfort look past the headlines because there is always a bigger picture. Sundays are for 60 Minutes.

http://www.leventakcay.com.tr

Kseroderma Pigmentozum Hastası | TGRT Haber
Haziran 2015

Daniel noticed his daughter, Daniela, was developing a small bump on her neck and took her to the emergency room at Nicklaus Children’s Hospital.

Due to a rare underlying condition known as xeroderma pigmentosum, in which the body lacks an enzyme to fix any skin damage and predisposes her to develop skin malignancies, it was suspected that Daniela’s bump could be a tumor. Daniela returned to her home country of Costa Rica to undergo a biopsy of the bump and received a melanoma diagnosis, the most serious type of skin cancer that develops in the cells that produce skin color pigmentation.

Daniela underwent surgery to remove the tumor, but after three months, it came back. This time, the bump covered an entire side of her face and doctors in Costa Rica told Daniela’s family that she only had about four or five months to live. That’s when Daniel brought his daughter Daniela back to Nicklaus Children’s Hospital, where doctors devised a comprehensive treatment and care plan.

Today, eight months after she was told she only had four to five months left to live, Daniela is on the road to recovery and receives ongoing care.

Give today at https://www.nicklauschildrens.org/daniela to help children just like her!