In the prayer-filled world of neuromuscular rehabilitation, Euromed's Adeli suit is the hot new therapy. Developed for the Soviet cosmonaut program, the suits, which employ a series of elastic bands that correspond to the body's musculature, have been used since 1994 for the specific rehabilitation of patients with cerebral palsy and other related muscle disorders. Adeli suit therapy is credited with normalizing locomotive and motor functions in patients' trunks and limbs.
Television magazine shows have aired stories on severely disabled children who have begun walking after wearing Adeli suits. Since then, the Internet has buzzed with hopeful parents seeking more information. On Nov. 1-2, Polish and American experts will present free seminars on Adeli suit therapy. The first will be held Nov. 1 at the University of Southern California's Davidson Conference Center (3415 Figueroa St.). Sessions will run from 10 a.m.-noon and 7:30 p.m.-9:30 p.m. Evaluations are from 1 p.m.-6:30 p.m. A second evaluation day will be held on Nov. 2 at the Holiday Inn Burbank (150 E. Angeleno Ave.) from 8 a.m.-6 p.m. Parents, doctors, therapists and friends are welcome. Call Harry Justvig at (435) 673-7164 or e-mail mailto:email@example.com for registration and information.- Staff Report
There are no community walk-a-thons to raise funds to find a cure for Stuart Altman's progressive, untreatable disease. No telethons or mass mailings are likely either.
Altman is one of fewer than 100 people nationwide diagnosed with "late onset" Tay-Sachs, a rare variation of Tay-Sachs disease. Tay-Sachs was previously thought to occur only in infants.
But Altman's diagnosis in 1993 confirmed that the neuromuscular disorder also strikes adolescents, teenagers and adults.
"All through high school I was always falling down in gym. I couldn't run," recalls the 47-year-old, now wheelchair-bound Altman. A volunteer fireman and paramedic in his 20's, he was unusually clumsy, a classic sign of the disease, which was unknown until the late 1970s. Typical of the multiple misdiagnoses experienced by most sufferers, Altman was told by his perplexed doctors that he had first one, then another, and yet a third neurological ailment. "No one ever mentioned late onset Tay-Sachs," he says. It was not until 1993, after contacting the Late Onset Tay-Sachs Foundation, that he found a knowledgeable doctor at Mt. Sinai hospital in Manhattan who finally diagnosed Altman's ailment, which also afflicts his sister.
Like other Jewish genetic diseases, late onset Tay-Sachs is diagnosed with a blood test. The disease stems from a deficiency of an enzyme that is needed to break down certain fatty substances that otherwise collect in the cells of the brain.
When the enzyme, hexosaminidase A, is in short supply, the nervous system is gradually impaired.Symptoms include difficulty going up and down stairs; difficulty walking and jumping; problems with balance; slurred speech and hand tremors. In some instances, psychiatric symptoms occur, including severe depression and mood disturbances. The disease becomes progressively more debilitating over time.
People with rare diseases such as Altman's have little political clout and must try as best they can to raise public awareness in the hope of capturing a share of available research dollars so that a cure can be found. The Late Onset Tay-Sachs Foundation is hopeful that private funding can support promising research at Harvard University, New York University and Oxford University in England.
More information about late onset Tay-Sachs is available at www.lotsf.org. - Staff Report
A Good Mutation?
There's finally good health news for Jewish women of Eastern and Central European descent.A genetic mutation that links some Ashkenazi women to ovarian cancer makes these women more responsive to chemotherapy, according to a new study.
Patients with what are known as BRCA mutations who had advanced ovarian cancer lived about two years longer than patients in a similar stage of cancer without the gene, according to the study of 189 Jewish women.
The study was published in the May edition of the Journal of the American Medical Association.In addition, the time for recurrence of the disease in patients with the mutation was about 14 months, as opposed to seven months for those without the mutation.
Eighty-eight of the 189 women studied had the mutation.
The finding "could open up new possibilities of how to treat ovarian cancer," said Jeff Boyd of Memorial Sloan-Kettering Cancer Center in New York, which conducted the 12-year survey, adding, however, that it had no immediate practical applications.
"It's a paradox," said Boyd. "The mutated gene is what leads to the cancer in the first place. But once it's developed, it could be an Achilles' heel for the tumor."
The genetic mutations that are linked to breast and ovarian cancers are more frequently found among Jewish women of Ashkenazi descent than among the general population.
A 1997 study into the risk of breast and ovarian cancers among Ashkenazi Jews found that a person with the genetic mutations has a 56 percent chance of getting breast cancer and a 17 percent chance of getting ovarian cancer by the age of 70.
Some 2 percent of Ashkenazi Jews carry the BRCA 1 or BRCA 2 mutations, according to the Human Genome Project in Washington. (See related story below.)
The incidence of cancer among Ashkenazi Jews is not higher than among those in the general population, but more of their cancer risk stems from genetic factors. - Peter Ephross, Jewish Telegraphic Agency
Circumcision MayProtect Against Penile Cancer
The initial decision to perform newborn circumcision as a preventive health measure in American newborn boys began around the turn of the century, and by the 1930s over half of all newborn boys were having the procedure performed. According to the March issue of Pediatrics, recent studies have shown that newborn circumcision can help prevent urinary tract infections, primarily in the first year of life, and reduce the likelihood of contracting certain sexually transmitted diseases. In addition, a recent population-based study from the Kaiser Permanente Medical Center and the Kaiser Permanente Medical Care Program supports the findings of previous research indicating that circumcision may also protect against invasive penile cancer (IPC).
Circumcision status was ascertained by a combination of medical records and questionnaires for 89 adult male members of a large health plan who were diagnosed with IPC. They found that of the 89 men, 2 had been circumcised as newborns and 87 were not circumcised. The researchers stated that the protective effect of early circumcision has been cited as a medical factor weighing in favor of recommending newborn circumcision. The findings of this study confirm the results of earlier studies indicating the overwhelming predominance of uncircumcised men among those diagnosed with IPC. - Staff Report
A Neglected Disease
Last November, The Jewish Journal brought attention to a much-neglected disease, pancreatic cancer, the fourth largest killer of both men and women in the United States and the deadliest of all cancers. During the past year, more than 29,000 people were diagnosed with pancreatic cancer and more than 29,000 others died. It is neither curable nor detectable in its early stages.
Ashkenazi Jews are at a greater risk of getting this cancer because it is associated with the BRCA2 cancer gene, inherited by 1 percent of Ashkenazim. There are numerous accounts of multiple family members dying from pancreatic cancer.The Pancreatic Cancer Action Network (PanCAN) works to focus national attention on the need to find a cure for pancreatic cancer. It provides public and professional educationto promote the need for more research, effective treatments, prevention programs and early detection methods. Last year PanCAN was instrumental in getting a 26 percent increase in government funding for pancreatic cancer research.
PanCAN will hold its annual "Evening With the Stars" fund-raising dinner in Universal City on Nov. 18, with Norm Crosby as master of ceremonies. This event will pay tribute to the life and music of Henry Mancini, who died of pancreatic cancer; others who succumbed to the disease include Michael Landon, Juliet Prowse, Rex Harrison, Fernando Lamas and Donna Reed.
For more information about PanCAN, call (310) 791-5214 or toll free (877) 2-PANCAN, or visit the Web site at www.pancan.org. For ticket purchases and additional information, contact Stephanie Pollak-Davis at (818) 908-3636 or e-mail at firstname.lastname@example.org - Staff Report
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