| Life-Threatening Sun-Sensitivity Disorders | ||
| Last Edited: Tuesday, 13 Nov 2007, 9:42 PM EST | ||
| Created: Tuesday, 13 Nov 2007, 9:42 PM EST | ||
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What is XP?
Xeroderma Pigmentosum (or 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, XP can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of the people with XP develop progressive neurological disease.XP is an autosomal recessive disease caused by mutations in genes that are critical for DNA repair. The body must repair DNA when it is damaged by harmful external agents such as ultraviolet radiation, X-rays and chemicals. There are at least eight genes that are critical for this DNA repair process. If a person is born with any of the eight genes not functioning correctly, he or she will develop the symptoms of XP. The genes for XP are: XP-A, XP-B, XP-C, XP-D, XP-E, XP-F, XP-G, and variant XP. Prior to the discovery of the XP genes themselves, the term complementation groups were used to describe the laboratory variations seen in the cells of XP patients. The cells were categorized according to the capacity of the cells to repair DNA after they had been damaged by ultraviolet radiation in the laboratory. Mutations in the A, C, D, and Variant genes make up over 90% of XP cases
How is XP diagnosed?
Often the first people to suspect that, something is wrong” are the parents. Many parents notice that in early infancy around 1-2 years of age their children will have unusually dark freckles (lentigos) or will have had severe sunburns after only being in the sun a few minutes. A thorough skin exam by a dermatologist, along with a small skin biopsy for laboratory testing, is the standard method for diagnosing XP. Xeroderma Pigmentosum can usually be conclusively diagnosed by measuring the DNA repair function from the skin cells obtained from the biopsy.
Symptoms
Early onset of freckling, (before age 2) especially in sun exposed areas of the skin, severe burns after only a short duration of sun exposure or exposure to ultraviolet lights. Some people with XP may develop burns even in shady areas.
Progressive Neurological Complications
What is the treatment for XP?
Dontez Taylor
Biography
Dontez Taylor is a single young man born February 10, 1981 in Cleveland Ohio He graduate of
When Mr. Taylor was eleven years old he was diagnosed with Xeroderma Pigmentosum (XP) a form of skin cancer, he is allergic to the sunlight rays. Mr. Taylor has five sisters, one brother who is his twin, and two of his sisters are twins as well. Dontez is the only one that has XP in his family. When Dontez was nine years old, he started showing signs of XP on his face, blisters and sores. His mother took him to numerous doctors and they were unable to determine what he had, until he was eleven years old. His mother took him to
Dontez Taylor is presently an active member of the K.N.O.W.L.E.D.G.E. Youth Organization, his efforts to educate the community of the disorder his been his focal point. If you are interested in more information in regards to Dontez’s participation in the K.N.O.W.L.E.D.G.E. Youth Organization, please contact Joyce Hood Executive Director of K.N.O.W.L.E.D.G.E. youth organization.
Joyce Hood
Executive Director
K.N.O.W.L.E.D.G.E. Youth Organization
9250 Miles Park Avenue
Cleveland, Ohio 44105
Office # (216)341-0757
Fax no (216)341-0226 / (216)341-1025
Email;
website; www.freewebs.com/knowledgeyouth
My name is Dontez Taylor I am a victim of a rare and incurable genetic disorder
Xeroderma Pigmentosum or X.P induced mechanisms;
characterized by severe sensitivity to all sources of ultra Violet (UV) radiation.
In short, we are people who are allergic to the sun.
To my understanding there are only 200 cases in the U. S. Less than 1000 nation wide.
I am the only known case in
This is so rare that I have had many doctors study me.
To this date, I had 27 surgeries to remove cancer cells from my body.
I could go to the doctor this week and have no cancer then the next week
I have the cancer reappears. The only time I can come outside is during the night,
which is when I go to school. I attend
I am also gradually losing my eyesight.
The reason that I am sending this letter is because I would like you to help me inform the community.
I am not crazy or weird. Sometimes I must go out during the day.
It could be 85 degrees and I have to wear a long winter coat and hood.
Nobody realizes that I am trying to protect myself from the sun.
I had the opportunity two years ago to attend the XP SOCIETY OF
which is located in
the ability to play outside without pain. Mrs. Joyce Hood has helped me achieve many things.
For the pass two years, she has become a true mentor for me. We work side by side.
Now I ask you to help me. I would like to give a fashion show,
so people could respect their bodies and see that you could
“Dress to Impress Wearing More not Less.”
I would like to be able to go back to this camp.
Finally, and the most important, please help me to inform the community.
Dontez Taylor
Since that letter was written Dontez Taylor has had 37 surgeries on his face.
He is no longer enroled at Tri C. He is almost totally blind. His belief in God keeps him safe.
On Saturday September 1, 2007, K.N.O.W.L.E.D.G.E. Youth Organization
was able to present the fashion show that Dontez wanted to have.
It was a wonderful experience to see the forfillment of his dreams in his face.
As he walked free from harm and nothing but love all around,
this was trully a blessed day.This event was given by the K.N.O.W.L.E.D.G.E .Youth.
It was coordinated by Rhemi Walton a K.N.O.W.L.E.D.G.E. member.
Ms. Walton is 15 years old and attends John Adams High School
where she is a tenth grade student. The special material used to
design the outfits were UV protected. Our volunteer Fashion Designers were
Tiffany Lane, Jackie Conway, Lillis Stokes, Deltrise Sanford, Kathy Sanford
and Nila Sanford. We were supported by the, Union Miles Development Corporation,
Ward 2 Cleveland City Councilman Robert J. White III, Ward 1 Councilwoman Nina Turner,
CMSD, Cleveland Public Library Union Branch, Cleveland Education Committee,
Ward 2, Democratic Ward Club, , BUILD, Wal-Mart's, Walgreens, CVS,
Pat Catans, John's Towing, Platinum Cuts, Citgo Gas Station, Marathon Gas Station,
D.J. LYNXZ & MORPHEUS Entertainment and many residents.
Check out our Fashion Show link, our pictures from that wonderful event has
been placed on our website for the world to see their greatness.
Dontez and The K.N.O.W.L.E.D.G.E. Youth Organization will continue
to raise awareness to this life threatening disorder.
Thank you everyone for your support in this endeavor.
Love,
Joyce Hood
Executive Director
K.N.O.W.L.E.D.G.E. Youth Organization
for more information on Xeroderma Pigmentosom visit
| Life-Threatening Sun-Sensitivity Disorders | ||
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| Last Edited: Tuesday, 13 Nov 2007, 9:42 PM EST | ||
| Created: Tuesday, 13 Nov 2007, 9:42 PM EST | ||
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