2023 Author: Anita Thornton | [email protected]. Last modified: 2023-08-25 11:16
Do you know spina bifida? More than 9,000 Quebecers and their families live with the consequences of this condition every day; June is the month to get informed and be part of the solution.Indeed, June is not only the first month of summer, it is also the national month of spina bifida: a congenital malformation of the spinal cord. This spinal malformation occurs before birth (between 3
e and 4e week of pregnancy), and causes paralysis and loss of sensitivity of the lower limbs. Spina bifida can also cause problems with the functioning of the bladder and incontinence, loss of coordination of the hands, sight, hearing and lead to learning problems. According to statistics, it is estimated that 9,000 Quebecers are affected by spina bifida and, each year, around thirty babies are born with this condition.
The screening for spina bifida is done during follow-up ultrasounds and by a blood test, between the 16e and the 18th week of pregnancy. “Talk to the women around you! »,proposes Dr. Anick Bérard, principal researcher of the Medications and Pregnancy Unit, affiliated with the CHU Sainte-Justine and the University of Montreal. Indeed, preventing spina bifida is one of the best ways to be part of the solution. Folic acid is our best ally, but 70% of women do not think of taking the vitamin supplement that would eliminate up to 72% of the risk of neural tube defects for a possible baby (ATN). Half of pregnancies are unplanned and consulting at the first symptoms is already too late to effectively prevent NTDs, because it must be done at least 3 months before conception for optimal protection,” adds Dr. Bérard..
Be part of the solution
“Ask people with spina bifida or their loved ones, they will all tell you that an environment and attitudes that promote independence and participation in life in society are the key to well-being when we have to deal, to a mild degree as well as to a heavier degree, with the consequences of this condition , indicated Nathalie Boëls, president of the board of directors of the Association de spina-bifida et d'hydrocéphalie du Quebec, who, well placed to talk about it, combines an active professional and volunteer life with hydrocephalus.
In addition to prevention, it is therefore essential to inform yourself and those around you: Spina bifida and the hydrocephalus (accumulation of fluid in the brain) which is often associated with it come with a panoply ofphysical and cognitive consequences which can be more or less complex to manage – knowing how to recognize them is already making room and allowing the person to live better with their difference, especially when it comes to a child,” explains again Nathalie Boëls.
Encouraging people's autonomy
Of course, people with spina bifida, like those who accompany them, need support, respite, social activities or sports. Their vehicle must be adapted, as well as their home. Dr. Mathilde Barbeau, a family doctor who also works in a rehabilitation centre, explains that “as a society, we still have to do to offer living environments adapted to people with reduced mobility. Let us be vigilant and encourage our governments not to cut corners on accessibility or services, a temptation that can be hard to resist in times of cutbacks. The latter knows a bit about it: she herself lives with spina bifida which has paralyzed her lower limbs and, to go about her many professional and leisure activities, she needs orthotics and crutches.
Donating, volunteering, ideas… 7 ways to support the cause
- Make a donatecash (with tax receipt for any donation over $20).
- Sponsor an Association project.
- Donate materials or provide technical assistance: printing, supplies, etc.
- Give us somevisibility: free publicity, distribution of bookmarks, retransmission of our content, etc.
- Hold a fundraising or awareness event in your community or within your company.
Fund or propose an activity for our members or give time to accompany our members during such activities.
- Donate your time during awareness-raising activities or for other association projects.
To find out more, visit the Association du spina-bifida et d’hydrocéphalie du Québec. You will find information, but also support. Happy Spina Bifida Month!
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