Health Canada has proclaimed June as Spina Bifida and Hydrocephalus Awareness Month
Hydrocephalus & Spina Bifida are complex conditions and unless you or someone you know has it, it’s much unknown.
Hydrocephalus is a build-up of cerebrospinal fluid in the brain, causing increased pressure inside the skull which can be caused by a variety of medical problems. Anyone can develop Hydrocephalus and may occur at any time during a person’s life. Hydrocephalus can be a serious condition, and must be treated. If it is not treated it can cause permanent brain damage or in severe cases, death.
Spina bifida is a neural tube birth defect (NTD) which occurs within the first four weeks of pregnancy and affects the development of the spinal cord. This results in varying degrees of paralysis of the lower limbs and permanent damage to the spinal cord and nervous system. And nerve damage is permanent.
The two conditions are often closely related, with 85 per cent of babies born with spina bifida also having hydrocephalus, according to the Spina Bifida and Hydrocephalus Association of Ontario.
Most people with spina bifida and/or hydrocephalus will have some difficulty in one or more of these areas: learning disabilities; memory loss; motor skills; pressure sensitivity; visual impairment; seizures; constipation; incontinence; or hormonal imbalance.
There is no cure for either of these conditions that result in varying degrees of disability. Physical and social barriers, medical complications, learning disabilities and financial burdens are some of the challenges that individuals with spina bifida and hydrocephalus and their families must face each and every day.
In 1994 I Troy Chandler was diagnosed with hydrocephalus at just 28 years old. We had been married two years and expecting our second child. My wife Annette and I knew nothing about the condition or what it meant for our future. We were scared and felt alone!
Living with hydrocephalus gave us a new purpose in life. After much research, Annette reached out to the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) located in Toronto. Since 2010 we became members of the association and are the local contacts for Sault Ste. Marie.
In 2012 Sault Ste. Marie’s first TROY’S TRAIL Spirit Walk was organized and created to raise awareness, and offer local support for all individuals whose lives have been affected by Hydrocephalus & Spina Bifida.
Annette and I are committed to making a positive difference in the community, and in the lives of individuals and families who are living with the daily challenges brought on by these serious disabling conditions. We both feel that a sense of community is essential to one’s (physical and emotional well-being) and helps to provide personal growth, closer inter-personal relationships, and increased self-esteem.
We are united by a common bond, and lean on each other for strength, emotional support, and coping strategies. They look forward to the walk because it is “their” walk too!
June is the month to highlight the importance of our cause through public awareness, media relations, and social media. Community is the strength of each and every Troy’s Trail, no matter how large or how small it may be, and that it’s the dedication and passion of the people involved that makes each year a success.
The event is a fun and rewarding day for everyone to look forward to. Each year the families, friends, and loved ones of the individuals who have the conditions proudly take the opportunity to participate in the walk for Hydrocephalus & Spina Bifida.
Troy’s Trail 7th Annual Walk takes place Saturday June 9th, 2018 in Clergue Park, by the Art Gallery of Algoma. Registrations beginning at 12:30, walk starts at 1:00. (If the weather is unfavourable, set up will be downstairs in the Library.)
YOU CAN HELP MAKE A DIFFERENCE SATURDAY JUNE 9TH! Come out and be a part of a community that is supportive and appreciates the challenges faced by people living with these lifelong neurological conditions. By working together we support each other to help improve the quality of life for all individuals.
DONATIONS: can be made securely online here. https://www.canadahelps.org/en/pages/troys-trail/
Contact Troy or Annette at 705-946-4532.
Visit our Facebook page: here. https://www.facebook.com/groups/335507903188827/
Local Website: here https://sites.google.com/site/hydrocephalusssm/