National Physical Therapy Month is celebrated every October, providing an excellent opportunity to reach out to the community and educate them about many of the unique aspects of the Physical Therapy profession. This year it is with great honor and support of one of Malone Central School District’s very own students that we raise awareness within the community about Spina Bifida.
The month of October is also National Spina Bifida Awareness Month, a time to educate the public and further their understanding about Spina Bifida while celebrating the lives of more than 166,000 Americans affected. Alysen McDonald is a Freshman at Franklin Academy High School that lives with the challenges of having Spina Bifida each and every day. In more recent years Alysen has been trying to take a more active role in opening up to her peers and educating members of the community at large on this disabling birth defect.
Spina Bifida is the most common permanently disabling birth defect in the United States. Approximately eight babies are born each day with Spina Bifida or similar birth defects affecting the brain and spine. Spina Bifida means “split spine” and happens when the baby is in the womb and the spinal column does not close all of the way. Its cause is unknown and the effects for each person can be vastly different. The four different types are as follows:
Occult Spinal Dysraphism: Infants with this have a dimple in their low back. Other signs are red marks, hyper-pigmented patches on the back, tufts of hair, or small lumps. In this type the spinal cord may not grow the right way and can cause serious problems as the child grows.
Spina Bifida Occulta: This type usually does not cause harm and has no visible signs. The spinal cord and the nerves are usually intact. It is usually incidentally found after having an X-ray done on the back. In this type pain and neurological symptoms may occur and a tethered cord can be an insidious complication.
Meningocele: In this type part of the spinal cord comes through the spine like a sac that is pushed out. Nerve fluid is in the sac and there is usually no nerve damage. Individuals may have minor disabilities.
Myelomeningocele (Meningomyelocele or Spina Bifida Cystica): This type is the most severe form and happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage amongst other disabilities. Seventy to ninety percent of children with this type also have too much fluid on their brains, as it is unable to drain like it should.
Spina Bifida Prevention: While the cause is unknown, it is recommended that women who are in their child bearing years take folic acid before and during the first three months of pregnancy. Since half of the pregnancies in the United States are unplanned, the Spina Bifida Association recommends that all women take a vitamin with 0.4 mg of folic acid daily during the years of their lives when they are possibly able to have children.
Limitations: As type and level of severity differ among young people with Spina Bifida, each person with the condition faces different challenges. While it presents unique challenges, those affected by Spina Bifida are usually able to attend school, work, raise a family, and spend time with friends like everyone else. Children with Spina Bifida often have to undergo multiple operations to try and protect the spinal cord from more damage and/or to address structural abnormalities. Children with Spina Bifida may have mental and/or social problems. They often must learn how to manipulate their environment independently or by making use of crutches, braces, walkers, or wheelchairs. Doctors, nurses, teachers, parents, and service providers should know what a child with Spina Bifida can and cannot do so that they can assist the child, within the limits of safety and health, to be as independent as possible. Children with Spina Bifida can lead full lives. Most do well in school and many play in sports. Approximately 90% of babies born with Spina Bifida now live to be adults, 80% having normal intelligence and 75% playing sports and engaging in other recreational activities.
The Spina Bifida Association, founded in 1973, is the national voluntary health agency working for people with Spina Bifida and their families through education, advocacy, research, and service. For more information on Spina Bifida we encourage you to visit their web site as well as the web site for the Spina Bifida Association of Northeastern New York. When visiting SBA’s web site please take the time to read through “The Real Stories Collection.” This is a collection of inspiring stories of people living each day with Spina Bifida. There are heartwarming videos and written accounts of their daily struggles and triumphs, serving as lessons of love, encouragement, and hope to all. In my profession, I feel blessed to have had the opportunity to service the children in our very own communities that have Spina Bifida and find myself inspired time and time again!
Also, Alysen McDonald in her efforts to increase awareness has created her own webpage at www.alysaim.weebly.com, titled "Aly's Aim For Awareness." On her page Alysen has the link to the Spina Bifida Association of Northeastern New York as well as her own blog. Alysen also has various products listed (i.e., T-shirts, Bracelets) for sale in an effort to raise money for the Spina Bifida Association of Northeastern New York. Alysen's goal is to sell 100 T-shirts, which will generate $994.00 to donate. The deadline for T-shirt orders is October 10th. Alysen, with the support of her family, would like everyone who purchased a T-shirt to wear them on October 30th as we end our October celebration of all of those individuals living with Spina Bifida. So I am asking that each of you please take the time to check out her webpage and, if you are in a position to do so, purchase a T-shirt or a bracelet to show your support. Wishing everyone an amazing October!
Wendy R. Norman, MPT K-12 and Holy Family Physical Therapy Coordinator Davis Elementary (518) 483-7802, Ext. 2344/Base School
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