Tuesday, June 24, 2014
Celebrate Abilities in June! Spina Bifida & Hydrocephalus Awareness Month
"Don’t let it stop you. Do what you can…It’s what you were dealt.” Becky Attersley
This positive attitude has driven Becky, who wasn’t expected to live beyond age 13 when she was born with spina bifida, to beat insurmountable odds and enjoy marriage, motherhood and a fulfilling life. Every June, Canadian Spina Bifida & Hydrocephalus Awareness Month celebrates this kind of spirit while giving the public an opportunity to learn more about these complex, lifelong neurological conditions.
Hundreds of Ontario families live with spina bifida and/or hydrocephalus (sb/h). Spina bifida is a neural tube birth defect occurring within the first four weeks of pregnancy. Hydrocephalus is an excess cerebrospinal fluid (CSF) in the brain. Affected individuals and their families face physical and social barriers, medical complications and financial burdens.
While there have been important advances in healthcare and support for people with these conditions in recent years, Joan Booth, Executive Director, Spina Bifida & Hydrocephalus Association of Ontario (SB&H), points out that many challenges remain. “We now have the first generation living a full lifespan, but there has been little research on secondary conditions and issues facing adults. It’s very difficult for these adults to find healthcare to meet their needs.”
SB&H’s broad spectrum of programs help support people in these situations, including teenagers and young adults moving from paediatric to adult healthcare and making decisions about education, careers and independent living. The leading charitable organization of its kind in the province, SB&H provides comprehensive resources and support to a wide range of people, from expectant and new parents through to older adults.
Normal Pressure Hydrocephalus
Educating the public and medical professionals about Normal Pressure Hydrocephalus (NPH), a little-known condition affecting one in 200 adults aged 55 and older, is an SB&H priority. Difficult to diagnose and often misdiagnosed as Alzheimer’s or Parkinson’s disease, NPH is readily treatable and the symptoms can often be reversed. For information about symptoms, treatment and to access an NPH Screening Test, visit http://www.sbhao.on.ca/hydrocephalus/normal-pressure-hydrocephalus
Folic Acid
June Awareness Month is the perfect time for women who could become pregnant to start taking a daily multivitamin containing 0.4 mg of folic acid and eating a folate-rich diet. Folic acid reduces the risk of birth defects such as spina bifida by up to 70%. Public education about the importance of folic acid has dramatically reduced the incidence of spina bifida over the last 10 years. www.folicacid.ca
SWWR
Join the Celebration!
Building a vibrant, supportive community is a driving force for SB&H. Here are some ways to celebrate Awareness Month throughout June.
-Spirit Wheel Walk Run (SWWR): Start, join or support a SWWR. Fostering the connections and acceptance that are so important to families living with sb/h, this signature event is sweeping the province.
-What Is It? Bookmark: Pick them up at your library for friends, family and yourself.
-Proclamation: Make sure your local government has officially proclaimed June Awareness Month.
Learn More: Visit SB&H on Facebook & Twitter.
To learn more about SB&H and June Awareness Month, please visit www.sbhao.on.ca or contact:
Joan Booth
Executive Director
Phone (416) 214-1056 , 800-387-1575
jbooth@sbhao.on.ca
The Spina Bifida and Hydrocephalus Association of Ontario is a Registered Charitable Organization # 107999310RR0001.
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