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Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-

Posted Sep 02 2010 4:37pm

During the Vote4Hope Pepsi Refresh Rare Disease Campaign , I am making video postings throughout September to raise awareness for all rare diseases, not simply the horrific disease called Niemann Pick Type C that my six year old identical twins suffer from.

Today’s videos are some of the most heartwrenching videos I have ever watched. The videos are of  a boy named Garrett who suffers from Epidermolysis Bullosa, or EB, a rare genetic skin disorder the the majority of people have never heard of, yet it apparently affects 100,000 children across the United States to various degrees.

Children born with Epidermolysis Bullosa lack the ability to produce the collagen-7 protein that acts as a glue to bind the inner and out layers of skin together. Garrett, “The Boy Beneath the Bandages” videos won the 2010 Rare Disease Day video contest.

This video is a true life view of what living day-to-day is like with a rare debilitating skin disease.

Please VOTE everyday at Pepsi Refresh for the Global Genes Project to win $250K so we can continue efforts to help the entire rare disease community.  Join the Rare Disease .

Check out why I am taking time the entire month of September to get the word out for  rare diseases such Epidermolysis Bullosa and read the  press release to learn more about the lack of treatments and cures for millions of people.

There are a number of other rare skin conditions such as:

  • Harlequin Ichthyosis – This is an extremely rare skin disease, caused due to a defect in ABCA12 gene. This disease is present at the birth itself. It is characterized by dry, scaly skin, which sheds 7 to 10 times faster than normal skin. The body is covered with fish like scales, which also have a hair growth on them. The scales are extremely hard and give the skin an armor like appearance. Herlequin ichthyosis is one of the rare skin disorders in children, which kills them within a few days of birth
  • Sweets Syndrome or Neutrophilic Dermatosis – This condition is a result of hypersensitive response of the skin to allergens. The skin tends to develop plaques all over the body, in presence of the allergen. Fever and pain are the accompanying factors, along with skin rash.
  • Morgellons Disease – This is yet another rare skin disease with an unknown cause. The condition is characterized by itching, crawling, biting sensation, underneath the skin
  • Argyria – Argyria is a cosmetic skin disorder which occurs due to excessive consumption of silver
  • Xeroderma-Pigmentosum – Xeroderma pigmentosum is a genetic disorder caused due to alteration of genes, responsible for normal DNA repair. As a result, the damage due to UV rays of the sunlight cannot be repaired. This leads to redness and itching of the skin, after sun exposure.
  • Urticaria – Urticaria is an allergic response to sunlight, food, stress, water etc.


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