Education video raises awareness about neurofibromatosis
A common, but poorly understood disorder stigmatizes and isolates patients.
Neurofibromatosis (NF) causes tumours to grow anywhere on or in the body. Despite the fact that this genetic disorder is as common as cystic fibrosis and as common as muscular dystrophy, Huntington’s Disease and Tay-Sachs disease combined, the general public knows little about NF1 and NF2.
The Association de la Neurofibromatose du Québec wants to shed some light on neurofibromatosis. They have produced and launched a bilingual educational video entitled Emerging from the Shadows (Sortir de l’ombre).
“This video is dedicated to every child and adult afflicted with NF because living with this disorder isn’t easy. Thanks to the numerous doctors’ appointments, tests and procedures required children and adults become intimately acquainted with the health care system,” says Lise Gagner-Frenette, president of the Association de la neurofibromatose du Québec and mother of a son with NF. “My hope is this video will not only sensitize the public, health care professionals and educators to the disorder, but it will also help focus research initiatives and help improve diagnosis and treatment.”
“We want people to know more about this disorder because patients are not necessarily receiving comprehensive care or community and schools services,” says Dr. June Ortenberg, a pediatrician at the Montreal Children’s Hospital of the MUHC. “Neurofibromatosis has been in medical literature for hundreds of years, yet it has only been in the last 30 years that a worldwide effort has been made to advance knowledge and research into this fairly common chronic disorder which affects males and females of all ethnic backgrounds.”
NF1 occurs in one in every 3,000 births and NF2 occurs in one in every 40,000 births.
Since those with NF suffer a multitude of chronic medical conditions throughout life, the Montreal Children’s Hospital has assembled a team of specialists who ensure children receive comprehensive care. Dr. Ortenberg says this approach is essential to make sure the full spectrum of the disorder is being effectively treated.
“I did not have any difficulties related to neurofibromatosis at school; I fit in well. At the elementary level, my mother sent me to an artistic school. Then, at the secondary level, people were much more understanding,” says Gabrielle Charron-Rainville, an 18-year-old with NF. “The greatest difficulty faced by a teenage girl with neurofibromatosis is the physical, because that’s what really matters when you’re a teenager, the physical aspect, make-up, advertising.”
“Because of the NF, I have café-au-lait spots, I have small neurofibromas, and I have to go to the doctor’s 2-3 times a year,” says Geneviève Moccia, a young adult with NF. “From pre-kindergarten to grade three, I had no problems. But, after that, I had a hard time. The teachers didn’t want to help me, and the students called me stupid, and everything else. This lasted until secondary three, when I changed to a new school, but now, things are really going much better; the teachers are helping me and I am getting really good marks.”
CONFERENCE FOR GENERAL PUBLIC
On Saturday, February 10, ANFQ is hosting a conference for the general public at the Hotel Delta Montreal, 475 Président-Kennedy. The conference begins at 9:30 a.m. with the presentation of the ANFQ video Emerging from the Shadows (Sortir de l’ombre). Dr. Korf will discuss new developments in the management of neurofibromatosis. Dr. Chantal Bouffard will talk about PDG (pre-implantation genetic diagnosis) and PND (prenatal diagnosis) in the fight against early childhood diseases such as neurofibromatosis and cystic fibrosis. Simultaneous translation service will be available for both presentations. For more information 514-385-6702.
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