Spinia Bifida Awareness Month

By Jenny Cole - 10:04:00

Spina bifida is a fault in the development of the spinal cord and surrounding vertebrae's, leaving a gap or split in the spine. The spinal cord hasn't formed properly and may be damaged as a result, in some cases for those suffering. Spina bifida means 'split spine'.


The cause for Spina Bifida is unknown, but through extensive research it's been found that taking folic acid before and during pregnancy, can reduce the risk in unborn babies.


There are 3 main types of Spina Bifida, which present themselves at birth.

1. Spina bifida Cystica myelomenigocele
2. Spina bifida Cystica meningocele
3. Spina bifida Occulta 


Most cases of Spina Bifida are treated through surgery, shortly after the baby is born. In some cases, surgery is not needed, and doctors allow the spinal cord to heal on its own with no intervention. With Spina Bifida Occulta, if it present symptoms later on, it is most likely that the patient will require surgery to fix the problem. 


I was diagnosed, by accident, in mid 2015. I had been having trouble with my hips for some time, when I got an X-ray to see if there were any underlying joint problems when they noticed that I had Spina bifida. The diagnosis came as both a shock and a sigh of relief, to finally know what was causing my hip joints to hurt so much. The hip pain was put down to a side effect of the condition and from how religiously I danced. Something I had been doing since a very young age. After numerous physiotherapy sessions to help regain some movement in my hips and to help deal with the pain, I stopped dancing, performing in my last show in May 2015. I'd say that was the worst part of being diagnosed. You never want to give up something you love and have been dedicated to for such a long time. It broke my heart to do so but it had to be done for me to get better.
Fast forward two years and I had, had no more side effects or consequences as a result of my diagnosis. Until a couple of months ago. It started off with little bouts of back pain that I put down to over-working myself before it grew to something much worse. As it's ongoing, I'm not going to go into much detail about it. In short term, I turned out to be 1 in 1000 that developed consequences as a result. Spina bifida Occulta, my form  of Spina bifida, is the most common, and a large portion of the population have it but are unaware as it never presents itself as a problem or goes undetected in the scans during pregnancy. However, for some, it does present itself as a problem and can develop consequences as a result, due to treatment being needed as child but not receiving it and to the child growing up, the spinal cord growing too, and as a result it being unable to cope, causing the side effects to occur.
My diagnosis story is ongoing and will be until I receive treatment. I'm aware that I am very lucky compared to others and that is something I'll be eternally grateful for. My story, however, is far from over, just yet.



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