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Jose was a 53-year-old stay-at-home dad and first developed kidney disease in 1993. Until then he had been a cook in a restaurant, but his disease caused him to stop working.
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A truck driver for nearly 20 years, Doug Stewart spends eight hours a day on the road, seven days a week. Used to relying on his sharp vision and quick reflexes to keep himself and other drivers safe, Doug knew he had to act when he noticed his vision deteriorating.
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She took home the gold medal in women's singles tennis at the National Kidney Foundation 2002 U.S. Transplant Games on the one year anniversary of her kidney transplant. But while she dominated that tournament, less than two years earlier, Yukiko thought her days on the court were over.
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Tyler and his brother were getting a little rambunctious and Mom place a hand on each child's shoulder. That's when she first noticed it. "I felt a lump in Tyler's lower neck," she said. "And it concerned me." She felt a little more and noticed a number of lumps. She immediately stopped shopping, paid for the few items she had and headed straight to an emergency room...
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The Muscular Dystrophy Association and the National Institutes of Health are supporting a vastly expanded, 400-person, multicenter study of the drug minocycline in amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). A recently completed study of about 40 people showed promising results.
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Jose Medina, a 53-year-old stay-at-home dad, first developed kidney disease in 1993. Until then he had been a cook in a restaurant, but his disease caused him to stop working. Jose was one of the lucky ones. He was able to avoid dialysis and proceed directly to a kidney transplant in 1994. Medicare covered 80 percent of the costs of the anti-rejection medications necessary for his survival, but only for the first three years following the transplant. After that, it became Jose's responsibility to pay for the drugs that could easily add up to a monthly mortgage payment.
But NKF's advocacy team was working behind the scenes and lucky for Jose, legislation was passed extending coverage for those transplant recipients who are over 65 and those receiving Social Security Disability benefits. One of thousands to benefit from this new law, Jose now receives Medicare coverage for 80 percent of the cost of his anti-rejection medication. The rest, Jose ruefully comments, “comes out of my pocket.” But he is quick to acknowledge that without the coverage, much more would be coming out of his pocket. Originally from Mexico, Jose now lives in Phoenix with his 18-year-old daughter, Melissa Angela. |
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A truck driver for nearly 20 years, Doug Stewart spends eight hours a day on the road, seven days a week. Used to relying on his sharp vision and quick reflexes to keep himself and other drivers safe, Doug knew he had to act when he noticed his vision deteriorating. Around the same time, he began experiencing constant pain in his back. When he saw an advertisement for a free Kidney Early Evaluation Program (KEEP) screening sponsored by the NKF, Doug decided to get himself checked out.
Medical professionals took Doug's blood pressure and tested his blood and urine. Their findings were shocking. Doug's blood sugar was just under 500, or to quote Doug “off the charts.” NKF staff immediately rushed Doug to the emergency room where doctors administered insulin to bring his blood sugar back into the normal range. Doug was sent home a few hours later with strict instructions to see his primary care physician as soon as possible.
“Finding out from the KEEP screening that I was a diabetic has turned my life around,” Doug says. “I have completely changed my diet and cut out all fried foods and sweets. I also make sure I exercise and take my insulin regularly.” Thanks to his new regimen, Doug has lost a total of 10 pounds and says he feels better and healthier than he has in a long time. |
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For 50-year-old Yukiko Marth, celebration was the order of the day on June 28, 2002. She took home the gold medal in women's singles tennis at the National Kidney Foundation 2002 U.S. Transplant Games on the one year anniversary of her kidney transplant. But while she dominated that tournament, less than two years earlier, Yukiko thought her days on the court were over. Diagnosed with end stage kidney disease following a three-day volleyball competition, Yukiko's condition forced her to be tethered to a dialysis machine for daily treatments in order to survive.
But the game wasn't over for this grandmother of four, masseuse and beauty salon operator. Her volleyball teammate and tennis partner, Charlie Kees, 38, made the save of his life when he offered to donate one of his kidneys. Says Yukiko, “I had just met him six months earlier and on Christmas, he told me he'd give me his kidney if we were a match.” Within weeks of the surgery, both Charlie and Yukiko were back on the courts. Says Yukiko, "Every time I play sports now, I am so happy just to be out there." She keeps the gold medal around her neck as a symbol of survival, health and friendship. |
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Tyler Warren, his younger brother and his mom had stopped by a store to get a few things for home. Tyler and his brother were getting a little rambunctious and Mom place a hand on each child's shoulder. That's when she first noticed it. "I felt a lump in Tyler's lower neck," she said. "And it concerned me." She felt a little more and noticed a number of lumps. She immediately stopped shopping, paid for the few items she had and headed straight to an emergency room. She knew something was wrong. A complete blood count at the hospital revealed Tyler's white blood cell count to be 190,000, well above the normal range of 4,500. Just some 30 hours after first feeling the lump, the Warren family found themselves miles from home at St. Jude, where Tyler began treatment for ALL, the most common form of childhood cancer. Once a deadly killer, St. Jude has increased the ALL survival rate from 4 percent in 1962 to 80 percent today. Standard-risk ALL is usually put into remission very quickly. The Warrens were expecting to go home in about six weeks. It would be more than 18 months before Tyler and his mother would be able to go home.
Usually, standard-risk ALL can be put into remission in 19 days from the beginning of treatment. But Tyler's was a tougher case. At the 19 day mark, Tyler's blood still indicated a 45 percent leukemia presence. He would need a bone marrow transplant—transplant that the family's medical insurance would not cover. But at St. Jude, insurance's refusal to pay doesn't stop doctors from providing the best medical treatment available. St. Jude donors make it possible for the hospital to cover all costs for medical care not covered by insurance, regardless of a family's ability to pay. The Warrens never had to worry about paying. This was good news, because Tyler needed three additional bone marrow boosters to finally put the cancer into remission. So far, it has worked and Tyler has been able to resume some of his favorite activities including playing golf with his father. |
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MDA Expands Trial of Antibiotic in Lou Gehrig's Disease
Bob Mackle of Tucson, Arizona
Charity that helped: Muscular Dystrophy Association
TUCSON, Ariz., Oct. 31, 2002 - The Muscular Dystrophy Association and the National Institutes of Health are supporting a vastly expanded, 400-person, multicenter study of the drug minocycline in amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). A recently completed study of about 40 people showed promising results.
Neurologists Paul Gordon, who heads the MDA/ALS Center at the University of New Mexico Health Sciences Center in Albuquerque, and Robert Miller, director of the MDA/ALS Center at California Pacific Medical Center in San Francisco, will direct the trial at 20 centers in the United States and one in Canada.
The study is likely to begin recruiting participants in early 2003.
MDA Director of Research Development Sharon Hesterlee said, "This study is exciting because minocycline is a well-known drug that could be offered to patients immediately, if it proves effective."
Minocycline, an antibiotic in the tetracycline family, is approved by the U.S. Food and Drug Administration for treatment of infections. The drug has recently been shown to interfere with a type of cell death that may play a major role in ALS.
ALS affects both sexes, usually beginning in middle age, and destroys muscle-controlling nerve cells in the brain and spinal cord. The loss of nerve cells leads to progressive paralysis and usually to death three to five years after onset. No cure exists.
In addition to its infection-fighting properties, minocycline appears to block the release of a chemical called cytochrome c from inside the cell. When cytochrome c is released from the cell's energy-producing subunits (the mitochondria), a chain of events resulting in cell death apparently results.
A drug that blocks cytochrome c release might block the cell death pathway and save nerve cells in ALS and other degenerative diseases, researchers say.
Earlier this year, Gordon and Miller found that minocycline was tolerated well by the majority of some 40 people with ALS who took it in high doses in a pilot study. Nevertheless, Gordon cautions against taking minocycline for ALS outside a formal study, where serious side effects can be monitored.
The pilot study wasn't designed to test effectiveness of the drug against ALS, he emphasized, but the new, larger study will be.
"We're quite excited," Gordon said. "We think minocycline has a unique mechanism of action as both an antiapoptotic [anti-cell death] and an anti- inflammatory agent. Medications like this haven't been tested before in ALS, so we're hopeful."
MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases. The Association has been vitally active in ALS research and services for more than 50 years, and has invested more than $135 million in its ALS program to date. It supports 29 MDA/ALS research and clinical centers across the country.
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