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April 13, 2000     Beverly Hills Weekly
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April 13, 2000
 

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Uest g : Jewish Genetic Disorder Hits Home By Dr. Bobby and Daniel Darvish  Bobby Darvh My brother and I are two young physi- cians. In the past few years we realized that our muscles were weakening and wasting away. No one in our circle of col- leagues, including neuromuscular sub- specialists, could figure out what was going on. After conducting numerous thowugh medical literature searches, we realized that the pattern of our muscle loss matched a newly-described disorder- hereditary inclusion"body myopathy (HIBM)- found in young people of Jewish heritage. At first we did not believe it because no one in our large family of over 100 relatives has ever known of this disorder. Since our discovery, we have met many families with affected family mem- bers. Muscle wasling usuall', begins around the age of 20-30. when mdividu- als are in the prime of lilt:, and v..ilhin 7- 15 ;ears. tte patient:, become -vhcichair b,und. At tater stages, the',c patieni- may become mtall.v disabled Many -I rhc aftccted individuals arc prolesskmats who have recently completed their gradu- ate studies- all wonderful and bright pco- pie whose dreams and goals will be shat- tered by this devastating disease. Since the disorder is caused by a reces- sive gene, like Tay Sachs disease, many people who carry the gene arc unaware that they have passed it on to their chil- dren. Perhaps most painful is the antici- pation of a young high school athlme. who has already noticed early symptoms of the disorder and wonders if his fate will be the same as his wheelchair-bound 34-year-old sister. There is currently no effective treat- ment for this disorder. After visiting many patients, we feel personally respon- sible to help find a treatment or cure. Statistics tell us that many Jewish chil- dren under the age of 20, who are cur- rcntly healthy, carry the gcnc for Ihi,; dis- ease. It is not too late for lhcm. After some research and ravelmg to Israel. where the di,rdcr is actxclv being researched at Hada,sah .Medical Organization (Mr. Scopus,. ,ae teamed lhal Vilh currcnl genetic and molecular technology, the possibility of finding an effective treatment in the next tew years No Breakage No Tracks Virtually llntletectable Lasts 3 to 6 Months Finest 100% Eurolan Human flair ATTENTION Actresses, Models, Dancers, Entertainers anti Anyone Desiring Longer Hair is very promising. With the help of world-renowned myopathy researchers at Hadassah Hospital, who are attempting to find the gene that causes the disease, wc have taken the first steps to help speed up the research at UCLA and other centers worldwide. Interestingly. the changes m the muscle cells are similar to changes that take place in the brain celts of Alzhcimer's patients, so advances in research on this disorder could potential- ly give us more clues in understanding Dan/el Dam/sh What can I do to help? To date there was no hope for our chil- dren who were affected with this disor- der. However, with the rapidly advancing genetic science and technology, the gene and its function can be idenlified and an effective therapy to stop the disorder can be developed. Your awareness, social, moral, and financial support can signifi- cantly speed up research and develop- ment of an effective treatment. Additionally, if you know people who 71  Statistics tell us that many Jewish children under the age of 20, who are currently healthy, carry the gene for this disease.   Ai/hcimcl  di',cv.-c ,> v. cll Wc are dcdicaUng our li',c', 10 trading an effeclive treatment for this disorder, ,rod with Hadassah's help. wc hope to realize our dream. What is HIBM? H.I.B.M. (Hereditary Inclusion Body Myopathy) is a genetic disorder common among people of Israeli and Middle Eastern Sefaradic heritage. What does HIBM do? It causes progressive wasting of the arm and leg muscles starting from the ages of 20-30. On occasion, it can progress to total disability. How does it affect me? Since the disorder is recessive (two genes are needed to cause disease), your children may be affected, even with two very healthy parents and parental fami- lies. There is no way of knowing who will be affected next. hac had cpericuce in medical & gcncl- iC Iceal'Ch, and who are micro%ted Io help, please have them contact us A.S.A.P. Call g 18.9905276 r 818.222.2064 How do 1 begin? Please inform all of your loved ones and friends regarding our eflorts. Your monetary donation helps to accelerate the research. Your energy, your time, and your concern will help our society to become more aware of a problem that can devastate our children at the most pro- ductive years of their lives. Begin by car- ing... I Bobby and Daniel Darvish are both doctors who are performing extensive research on HIBM. On Sunday, April 16 Channel 18 KSCI will be raising awareness and funds through ARM (Advancement of Research in Myopathies) telethon. Aori113-1.q. 9(3(3(3 7