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WITMYPRElPRER, WEDNESDAY,;FEBRIUARY 7;1990, PAGE 23 SImagine is a national campaign of The Canadian Centre for* Philanthropy to increase Canadiaýis' awareness and contribution to > ll charitable and volunteer organizations. We support' their goals and are contribi4ting space for the Imagine ads on this and other pages. To bring the campaign dloser to home, the Whitby Free Press is running a series of profles of the needg and activities, of local organizations. Cail us if your organization could use a boost. Old disease finally getting attenti'on By Trudie Zavadovico When Stuart Drew was 16, be had bumps on bis chest. No one paid mucb attention te, the tumoreus bumps until, at age 43, wben be was undergoing a rou- tine examination 'by a Whitby docter, be was diagnosed as hav- ing neurefibromatosis (NF), a genetic disease that affects one in every 3,000 pe>ople worldwide.- STUART DBREW, presidentg Neurcfibraato8 Sociey, is control and cure. 'More Canadians bave this genetic disease than any other neurological genetic disease in tbe world,» says Drew wbe, now in bis fMfies, bas nmade it bis business te find eut as mucb as be can about NF. He says that many danadians wbo bave it, don't know it, wbile otbers know they bave it but won't admit te it. biste'r case bas a different hiyt says Drew. That's why NF, fut discovered more tban 100 years ago, bas been so hard te track. Cases can range from those tbat are virtually undetectable by tbe untrained eye, te grossly disfiguring and life-tbreatening. Hollywood belped te, publicize NF bv incorret» linkini it td et the Durham diapter of the Canadian i otimis tic that research will bring future. tbe saie disease which even- tually claimed tbe life cf the Tlepbant Man!~ Althougb tbe researcb was incorrect it served a useful purpose by creating awareness, bowever in- accurately, about NF, and 'et tbh& stage for public aw~arerýss te 51rew emphasizes that NF is a geene disease and net contagi- eus. H1e says children bave a 50-50 chance cf inberiting it from parents who bave it, but adds «It cannot jump a gneration.» That means if a child dloes net inherit it, there is ne chance cof bis/lier child inheriting it. "Mhe first tell-tale signs are ligbt birthmarksi appearing on the body (could be six or more) «Then tumors start appearing on the skin around puberty increas- ing in size witb age. ihey can increase raîidly tili tbey get te a large size, says Drew. 'These tumors appear on the nervous system of the body." He says that there are dif- ferent stages cf NF, althougb it does not« follow that ail people witb NF go througb ail stages. The disease can lie dormant for years or even for one:a wbele lifetime. It can aIse, flare up at any time and progress quite In s~ltage one, a person can bave anywhere up te 500 or 1,000 tumors te, where you can't even put a pen between any clear space on t he body." Drew says tbat this is the extreme cf stage one and reminds us tb4t some people may only bave'a few marks. Tumors resulting from NF bave only a three per cent chance of being cancerous. "In stage two, the tumors can appear inside the body and attack the nervous systemn and teorpns sucb as tbe liver heatlunskidneys, eyes and1 spine» Once it attacks the brain, Remember that dream yoha last mht i ! It' s me, your conscience. Living here in your dreams is like having passes to the world's most excitmng movies. . .with you and nme in the starring roles! Sometimes you're the monster that swallowed the Umiverse... .or the last of the great romantics...and some- times you re a hero - doing extraordinary things and makmng people's lives better. My very favourite movie is the one where you reach deep within us and change the world, simply by giving time and money to helpn the people around us. And like ai gre-at stars, you make helping causes you care about look easy. Could we watch that one tonight? Imagine is a national program te encourage giving and volunteering. deforming of the legs and spine can take place.,Bad deforming of legs and arms may lead to ampui- tation. Drew says that once in this stage, the disease may cause mental retardation, blindness, deafness and, eventually, death. H1e says that if an infant or a child has NF, there are signe. "Early stages in children may be a slight enlargement of the bead. Iàttle cbildren are inclined to drool terrifically. Tere may also be heavy freckling, perhaps under armpits.» Drew says that NF is one of the leading causes cf hard-of- learning. Iii women, NF can often start in pregnancy. No standard -test has been developed for NF except in the case of the eéts. "In the U.S., they now have a test to see if a fetus bas NF,» says Drew. "At the moment there is little or no research being done in Canada. Last June, we lost one our te scientiste on the subject te U&S. research. They are doinq research in'the London (Ont.) chinic and are looking for people with NF. Third ~nr ain people are ideal candidates for research.» On Tuesdays, there is a clinic in Sick Children's Hospital for children suffering from NF. The NFScety of Ontario is cur- rently trying te get an office. Drew is president cf the Durham cbapter and bisewieFa is vice-president. Their major focus is increasing public awareness,, and acting as a su pprt system for those Who have NiF. Drew feèls that there will soon be some positive results fromn research. 'For people like me who have itthere is ne hope. But I really bieve, in years te corne, new generations can be treated..My forecast is that within the next five years, they will iselate the gene; within 10 years, new cases will be treated; and within 15 years NF will be history» In, the meantime, Drew says that he is one of the lucky cnes. H1e periodically gets bis tumors removed, and NF bas net intru- ded on hi life in the m anner it has fer many. H1e and bis wife Fay are comi mitted te creating public aware- ness and helping etbers wbo bave NF - te understand it, and te live witb it. His messae te readers wbo suifer from NF, or wbo want te know more about it, «I wish they'd phone me - anytime, day or nigbt» Neurofibromatois Organization of Durham 1Region Membership - 30 1 -'te create publ;ic