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" Ao.Vm, i mtmnv vv imvoq wa m1'TnwOfl &v .TT.v gr, i 00 ?AGii12, 4WEU.LL n IRM r ii~ ~ ~ l LjA1EAil8rn , ~a juxzlo ""j <j, Mafan Sydrome: By TUdie Zvdvce When Most people talk Of becoming 'unglued' or "osingit they reor to bosing control ofp one s tempor or pesetve. To those sufferingrfrom Mar- fan Syndrome, the expression May very wel take on a coin- pbetely different and more literai meaning. Marfan is a disease that attacks the body's connective tis- sues wbich hold together- the body's major systems, suéh as the skeletal and cardiovascular systems. People with Marfan bave weakened connective tas- sues. Aleneas Lane teaches at Port PryHigh School. Now six-foot., for-inches taîl, hoe earned ho had Marfan when hoe was an_ infant. However, it wasn't until a few years ago that hoe came ta, ternis witb this disease. Like many Marfan sufferers, wbich numbor about one in every 1,000 people, Lane inherited tbe disease. Marfan bas been in Lane's family for at least the past seven generations, going back tothe 1840s. Cbildren have a 50 per cent chance of inheriting the disease. Although Marfan is attributed te, a dominant gene, doctors don'i know what gene it is, or what M results from the molecular changes in the gene. The disease is named after Antoine Marfan a French doctar, wbo made the 1&rt diagnesis i~ ..~,...... 1896. «We believe a lot of people with Marfan don't know it,»" says Làane. Z This was the case with famed basket bail player Flo Haxnmen wbo dropped dead, from a rup- . tured aorta, on the basketball court some years ago. She had no idea of ber condition. Later, an autopsy sbowed she bad Marfan Syndrome. ANA AE einldrco fteDra Lane says that because there AEESLNrgifi1dec rof heD ha bas been very little research chapter of the Canadian Mai-fan Assocition. done on Marfan, there are no Chri. Bovie photo definitive diagnostic tests. There are, bowever, tests that are made that determine the pro- sence or absence of four symp- Marfan. toms. «There is a problem with the sound picture of the beart and First the genetic bistory is beart and major blood vessels. can detect abnormalities of the examined. In Liane's case, ho was People with Marfan frequently heart valve and any enlarge- diagnosed at an early age have abnormalities of tbeir heart monts." because of the past history of valves. The valves leak. There is Aiso new la a medicine called Marfan in bis fainily. not enough blood pumped ta the Beta Bbocke>rs wbich reduces .Lane, wbo wears very tbick right places.» bbood pressure and the itensity lenses, says that Marfan suf- Lano explains that the major oftbhe arbat. ferers can have detacbed oye blood vessel which comes from "Ini theory it should work,» lenses beèause of the buss of the heart is the aorta and that says Làane. "One study showed it connective tissue. When that boss the blood vessels are mnade of made a significant difference i occurs, there must bo immediate connective tissue. Force and the size of the aorta after five trotmetwithi hours or it pressure to the heart weaken years, a difference of nearly one can result i blindness. this connective tissue and the and -a halfecentimeters.» third sypo of Marfan is aorta begins te stretch and Lane uays the utudy, wbich very tall, elongated ukebetal fea- enlargo. took place in Britain i the mid tires - lon- lib- long fingers At a certain poit it wilI up- -eighties was of two groupa of 20, and toos, a éerl eongation of ture or tear. In a case like that, ta 25 iqarfan sufferers. Oue misigthe ties that bind Canadian Marfanr Asociatioei- Durhiam Régioni -to act as a su pr gopfor Marfan sufferer andtheirfamnilies; . to create public and rofessonal awareness about Maan Syndrome; -to educate Marfan sufferers to get the best care and make lifestyle choices; - to foster research about Marfan Syndrome. Membershipx 15 Contact: Aeneas Lane 985-9181 the operation. Although Lane always knew ho had Marfan fear and anger led to denial anâ ignorance of tChe disease. It wasn't until he saw a group of bis students reading about it in the March '86 edition of Sports lllustrated that ho came to terms with having Mar- fan. «The hoadline was Marfan Syndrome - the sulent killer. It talked about the death of athietè Flo Hamimpn. That acted as a catalyst for me. In the article was the address of the National Marfan Foundation i the U.S." Lane wrote and got as much information as he could. He bas sinoe started a Durham chapter of the Canadian Marfan Associa- tion. «We currontly have chapters from coast to coast. Most clxap- tors are ini the formative stages. «Generally, I wanted to raise the profile of Marfan. I wantod to set the limits to. the Durham Region. PresentlX there are about 15 members. Lanes says that the group is a support group for Marfan suf- ferers as well as a an organiza- tion to create public awareness and a better knowledgo and understanding of Marfan. He says that evon doctors are taking a keener interest in tbe diseaso theso days. It took Làane most of bis 36 years ta, come to terms with tho disoase. Ho feels fortunate, hie has't lhed any of tho painful. dobilitating probloma assoootia- ted with it, or any serlous heart problems. "I guess in my adolescence I was aware that many peopleoin my family were tali and woro glasse. And thoir hearts went. I had an uncle who died'in his early M0', another in his 40's. and an aunt who diod at 59. Emergenc3r surgery saved one uncle s life until ho <ied six years later.» "I guess oudon't cope with, it very well Yo me it's understand- able tbatpeople have called once, goIie underground and are work- mng it out or themselves. There are some of us wbo. are more, incined to get actively mnvolved. Mlanypeople bave it, -know.they baeibut h ave noverme anyone else with it.» Lane bas* had ta make adjust- monts in bis life. qI used to do tbings like mun, and lift weigbts. Now I walk for exorcise. I walk back and forth ta work eacb day. And I feel good. You can cycle, swim and waUlk There are lotso sports youcan engage in. But you sould t1 away from'running,. basketbal volleyball and stretching your arms over your head. Stijliyon can live a reasonably active lifo. "fihe adjustments are worth making,"tesays ILane.» I stili feel fit, active and energetic.n Lane says hoe now confronts bis problem instead of running from 't. qI try to handlo it ini a deta- ched and informative- way. -The way ta deal with problems lu ta' conifront them andr do somothing about it. Runnling away didn7t work. When I founid the courage ta deal with it, life got botter. The Marfan Association of Canada is a non-profit organiza- tion. The Durham chapter met on a quarterly basis last year ta gave in dividuals the resources and help they needed. This year, Lane says he'd like-to meet more reqularly. Ho also finds bimself doing much of tho organization. UI just got there first, I just bave to bo patient." Anyone interested in informa- tion or lbecoming involved in the Canadian Marfan Association - Durham chapter cail Aeneas Lane at 985-9181. Imagine is a national campaign of The Canadian Centre for Philanthropy to increase Canadians' awareness and contribution to ai charitable anj volunteer organizations. We. support their goals and are contributing space for the Imagin3 ads on this and other pages. To bring the campaign closer to home, the Whitby Free Press is running a series of proflesof the needs and activities of local organizations. Cail us if your organization could use a boost. A FOUR LEId1TER WORD WE SHOUIDAi USE MORE OIEN. GIVE. pveg nbgnwihiyI -7.77-7.7 ----------- p 11-l'