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articles -
extraordinary measures
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Written by Gail Ouellette,
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Sunday, 24 January 2010 17:37 |
The movie "Extraordinary Measures", now playing in movie theaters and featuring Harrison Ford is about a father who fought to get a treatment for his two children who have Pompe disease.
Pompe disease is a degenerative muscular disorder. A treatment was developped. It is called Myozyme (distributed by Genzyme). Babies who are diagnosed soon after birth would not live more than one year before treatment. Now, many have survived passed 3 years. Symptoms of Pompe disease can appear at any time: infancy, adolescence, adulthood.
Myozyme has been approved by Health Canada. However, it is not available everywhere in Canada. Each province decides whether a drug will be reimbursed or not.
It is an expensive drug (taken for life). In Ontario and Alberta adult patients can be put on Myozyme and an evaluation is made over time to determine if it has a positive effect.
In Quebec, it has been approved only for infants who developped symptoms before one year of age.
In New Brunswick, the only known adult affected with Pompe disease has not yet been able to get access to the treatment.
The true story on which the film is based is told in the book "The Cure" by the Wall Street Journal reporter, Geeta Anand (a Hollywood film does not tell all...)
Below you can read or watch some testimonies of Canadian patients who are members of the Canadian Pompe Association and of one patient in the U.S.
SEE THE CANADIAN POMPE ASSOCIATION WEBSITE FOR MORE INFORMATION: http://www.pompecanada.com/
- From Alberta:
http://www.albertalocalnews.com/reddeeradvocate/news/local/Pompe_disease_survivor_eager_to_see_movie_concerning_the_affliction_81964417.html
http://video.calgarysun.ca/video/featured/calgary-and-alberta/5790927001/new-movie-hits-home-for-teen/61333858001
- From Ontario:
http://www.mississauga.com/opinion/columns/article/249647--time-for-my-miracle
- On CBC (report is at about 14 minutes into the News bulletin):
http://www.cbc.ca/video/#/News/TV_Shows/The_National/Latest_Broadcast/ID=1394165850
- From New Brunswick:
http://www.cbc.ca/health/story/2010/01/21/nb-pompe-disease-extreme-measures.html
- A friend from Toledo, Ohio:
http://www.toledoblade.com/apps/pbcs.dll/article?AID=/20100123/NEWS32/1230362
- See press release by the International Pompe Association:
http://worldpompe.org/images/uploads/EM_PressRelease_IPA.pdf
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Gail Ouellette, Ph.D. CCGC
Geneticist/Certified genetic counsellor
Portail Québécois des Maladies Génétiques Orphelines/Quebec Portal for Orphan Genetic Diseases
Member, Canadian Association of Pompe
gail.ouellette@pqmgo.org
www.pqmgo.org<http://www.pqmgo.org/>
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