Friday, August 01, 2008
11 year old girl suffers from rare health condition that causes one’s skin to turn to stone…….
[This is a rare disease I have never heard of but certainly can image how hard it must be on her parents to watch and the digression of their daughter’s condition…. ]
Young girl’s skin is turning to stone as she suffers from a rare, incurable disease called acute systemic scleroderma, Scotland’s Daily Record reported Thursday.
The autoimmune disorder means Hope Barrie’s body produces too much collagen, causing her skin to tighten and harden.
It is difficult for the 11-year-old from Tarbolton, Ayrshire, Scotland, to move around, and she has already had to give up one passion.
“I loved playing the violin and it would be amazing to start playing again,” Hope said.
Hope suffers from the systemic version of the disease, which starts out with poor circulation in the fingers and progresses to thickening of the skin, according to the International Scleroderma Network’s Web site. The disease may even spread to her organs.
As the disease progresses, the hardening of the skin makes it difficult to move fingers and toes, and open the mouth. It also can form scar tissue around the internal organs.
In America, the disease affects about 300,000 individuals [ which in my opinion is too many not be aware of ] many of whom are females between the ages of 30- to 50-years-old at the disease’s onset, according to the International Scleroderma Network.
Hope’s family told the newspaper they’re hoping that pioneering stem cell treatments being done in the U.S. may also help Hope, who is currently undergoing chemotherapy to fight the disease.
Although there is no cure for scleroderma, researchers at Virginia Mason Research Center and Duke University Medical Center are working with a stem cell procedure that has been shown to reverse the symptoms of the disease.
Emily Woods, of Plano, Texas, had the experimental procedure in 2006, according to a New York Times article. Within six months, the 87-pound mother — who had been close to death — was back on her feet and enjoying her daughter, the article said.
The transplant process involves doctors removing the stem cells from a patient’s own blood cells and returning them to the body, where it is hoped they will regenerate.
[ I know I came across “Gastroparesis” when a good friend of mine called and told me she had been diagnosed with this condition and I was just recently diagnosed with a condition called “hyperparathyroidism”. It just makes you wonder how many diseases there are that we don’t know about. I’m thinking of starting a blog on rare conditions that need public awareness. If anyone would like to help me work on this project just let me know……flagranny2 ]