Guest guest Posted June 22, 2003 Report Share Posted June 22, 2003 http://msnbc.com/news/926313.asp?0cl=cR Hope for Cystic Fibrosis treatment? One mom’s search to save three sons from a deadly disease THE TODAY SHOW June 16 —  When 3 of her 6 children were diagnosed with a deadly disease, one mother took on the challenge to help her children, and countless others. NBC’ s Soledad O’Brien has this report. ‘He was very skeletal looking. He had the distended belly. It was clear there was something really wrong with him.’ — VALERIE HUDSON     THE CASSLER BOYS: typical brothers, playing in their backyard in Provo Utah.     6 year-old ny.     3 year-old Tommy.     1 year-old Jimmy.     Fun loving, boisterous and outwardly healthy but inside each boy is fighting Cystic Fibrosis, a genetic disease which coats the lungs with thick mucus. For patients, breathing gets progressively more difficult and many die before their 30th birthdays.     was the first to be diagnosed, at 9-months-old.     “He was very skeletal looking. He had the distended belly. It was clear there was something really wrong with him,†says Hudson, the boys’ mother.     Hudson, a political science professor at BYU and her husband Dave watched “Lorenzo’s Oil,†a movie about a couple with no medical training who found a way to help their terminally ill son.     was inspired. “I remember after watching it, saying, you know, ‘honey… should I quit my job? Should I go to medical school?†    Soledad O’Brien: “When said that, did you think, ‘That’s a great idea, we need to figure out a way that we can do this, do something?’ Or did you think, ‘She’s insane, this is crazy?’†    Cassler: “We saw that there hasn’t been that much accomplished since they discovered the gene in 1989. I started to believe that what was feeling was the right way to go.†    So continued to work full time, and she took on a second full time project: researching Cystic Fibrosis on the Internet.     She read thousands of scientific abstracts written by researchers around the globe.     “I couldn’t recognize hardly any of the words, you know, unless — the one’s I did recognize were like ‘the’ and ‘and,’†says Hudson.     She borrowed her oldest son’s high school anatomy text book and taught herself basic biology and biochemistry. She was exhausted, but it was a race against time.  “When doctors have given your child a death sentence and your child is 3 and the average age of death is 23, you just don’t have time to waste,†says Hudson.     Her breakthrough came in August 1998 — after reading an article about glutathione, a protein found naturally in the body that helps regulate the immune system.     Cystic Fibrosis patients have very little glutathione — it gets trapped in the cells, and seems to contribute to the build up of mucus. thought glutathione supplements might help break down the deadly mucus.     Hudson says, “I was assuming, ‘Ok, I can’t cure it. But isn’t there something that can be done to slow the deterioration?’†    With her pediatrician’s blessing, and help from a friend who owned a factory that could produce glutathione, started on the supplement.     ’s infections cleared up, he developed a ravenous appetite. The thick mucus that made him cough and wheeze thinned out.     Hudson: “For the first time in his life, he started to drool! Can you imagine a two-year- old who’d never drooled in his life?†    O’Brien: “How bout his weight?†    Hudson: “Oh boy his weight. When he was first diagnosed he was barely on the weight chart. Well after several weeks, a couple months on glutathione ny had jumped to the 70th percentile for weight.†    A year later, despite the risk of having another child with Cystic Fibrosis, got pregnant again.     O’Brien: “If you know you have a genetic disease why would you keep having children?†    Hudson: “We want to tell that we didn’t stop having more children because of him and who he was. We began to think of Cystic Fibrosis more in the way that people now think of diabetes. We no longer view cystic fibrosis as an utter tragedy.†    and Dave’s fifth child, Tommy, was born June 1999. He too was diagnosed with Cystic Fibrosis. Tommy started on glutathione almost immediately, and like he responded well.     ’s next move: getting her findings into a medical journal.     Four months after Tommy’s birth, ’s article was published. Some in the medical community were not impressed.     “There was one researcher who, when he found out I was a political scientist, he was actually very upset at me. He said, ‘You are wasting my time. You’d be better off baking cookies for bake sales to raise money for my research,’†says Hudson.     figured a clinical trial would give her theory the credibility it lacked. She persuaded Dr. Bishop, a pulmonologist and a director at the Utah Valley Regional Medical Center to oversee the trial.     Bishop says, “We think that glutathione has received insufficient atte ntion. I’m not sure why more PhD folks and why more MD folks haven’t jumped on this theory because its something that makes good sense and it looks like it should have been explored a long time ago.†    They raised $50,000 to fund the study. By summer 2002, with 19 children enrolled, testing got underway.     By then, was pregnant with her sixth child. When Jimmy was born in May 2002, he too was diagnosed with cystic fibrosis     Jimmy started taking glutathione. And slowly word of glutathione was getting out to other CF parents whose children are using more conventional methods like a feeding tube and a vibrating vest to break up the mucus in the lungs.     The results from Dr. Bishop’s trail are now in, and have been submitted to — in his words — a much respected medical journal. Both Dr. Bishop and know their findings are preliminary but hope that will change.     Dr. Preston , Medical Director of the Cystic Fibrosis Foundation, says glutathione while promising is experimental.     “Because it’s an experimental therapy we really don’t know if it is indeed safe or if it will offer a great deal of benefit for CF patients. But there is hope it will. Families need to know there are other proven therapies we would want them to use them before using an experimental therapy.†    For , her greatest hope is that this small step will finally be embraced by medical researchers, who can take her work to the next level, for her children, and all children with cystic fibrosis.     The use of glutathione in Cystic Fibrosis patients is still experimental. The National Cystic Fibrosis Foundation recommends patients talk to their doctors before using glutathione. Becki YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
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