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HealthChiari 1 patient hopes to connect with othersBy Melanie CummingsIf I could save one person's life bySPECIAL TO THE BEAVER helping them get a proper diagnosisto help ease their suffering,aving a rare illness can be isolating, even in an age where communication with a wide then I have done something Haudience is easy.positive and isn't that what life'sJen Sipos has known such solitude for the past year, about, helping our fellow humans?since being diagnosed with the relatively unknown con-dition called Chiari 1.Jen Sipos, Oakville residentShes hoping that if there are others in the commu-nity struggling with it too, that theyll form a support group with her.nection of a live support group. The persistent migraines, garbled speech and short-I don't know anyone else in Oakville or Haltonterm memory loss Sipos suffered after hitting her head with Chiari, said Sipos. If she doesn't make such aon concrete in a fall July 2009 led to an MRI brain scan connection, Sipos at least hopes to connect within December. It immediately pointed to Chiari 1.other brain surgery survivors, to compare notesAccording to research so far, on this condition that during recovery and perhaps lobby for research andaffects one in 1,000 people (in the United States), it's awareness in the medical community.very likely Sipos was born with a brain thats too big for Unlike the United States, Canada has no doctorsher skull. As a result, the excess spills down into the who specialize in Chiari 1 surgery and no dedicatedspinal column, in turn, wreaking neurological havoc on medical facility. the body. I waited in pain a total of 13 months before I wasMany people with Chiari 1 are unaware they have it able to find a neurosurgeon who would help andand can live an asymptomatic, normal life, said Sipos. operate on me, said Sipos.But a trauma to the head can bring on the symptoms She needed a cane for balance to walk and devel-such as chronic fatigue, migraines, loss of balance and oped embarrassing yelping sounds every five min-involuntary throat contractions.utes due to involuntary throat contractions.Its for this reason that Sipos urges anyone experienc-Most of my days were spent in bed or on theing such symptoms to insist on an MRI to rule out Chiari couch, I was barely able to take care of my 15-year-1.old son.It was through advice from a woman Sipos met For her part she has provided Oakville-Trafalgaronline, that she sought surgical treatment from neuro-Memorial Hospital with literature about Chiari 1,surgeon Dr. Loch Macdonald at St. Michael's Hospital in through the website www.conquerchiari.org, creat-Toronto. The surgery was Aug. 5, 2010 and it put an end ed a Facebook page, and is hoping the local supportto the migraines, speech loss and loss of balance.group will become a reality.But Siposs arms remain weak, fatigue persists and it NIKKI WESLEY / OAKVILLE BEAVERIf I could save one persons life by helping themmay take up to two years for the nerves in her brain toget a proper diagnosis to help ease their suffering,MAKING THE CONNECTIONS:Oakville resident Jen Sipos is recov-heal, which means she cant return to her job as a day-then I have done something positive and isnt thatering from brain surgery after being diagnosed with a rare brain condition calledcare worker yet.what lifes about, helping our fellow humans?Chiari 1. In the meantime she longs for the one-on-one con-www.insideHALTON.com OAKVILLE BEAVER Thursday, March 3, 2011 12