What is Spina Bifida?
Many people ask me what Spina Bifida is. It is basically when the spine stops forming completely and the nerves keep going, typically into a tumor on the lower back. Sometimes babies have this tumor and other times the skin has not fully formed in this are and needs to be closed.
What is the mortality rate?
In the past it was higher, with many not living until their 18th birthday. With the progress that medical science has made, this rate is much lower. The important thing to remember is that none of us has a time stamp on us. Whether you are born healthy or not, many factors affect how long that we live. These include nutrition, exercise, how well we treat our bodies and most importantly of all, in my opinion – attitude.
If you have spina bifida, it is up to you to maintain a positive attitude and to go for everything that you want in life. If your child or loved one has it, then it is your job to support and encourage him or her to live life fully.
My parents told me every single day that I could be do or have anything that I wanted in life. Because of their encouragement, I have:
- traveled by plane, boat, train and car across the United States
- learned to drive with hand controls
- traveled to Europe several times
- gone to college
- set up internet business
- trained for a marathon
- written books
Your body needs to be cared for. More importantly your mind and spirit must be encouraged and guarded against negativity.
What Spina Bifida Doctor Should You Use?
Find a doctor who has a positive attitude about your condition. I have gone to so called experts that were ready to right me off and tell me all of the horrible things that would come to pass. We dumped them immediately. I have also gone to doctors who have told me that I could do anything and that each case is different.
You need to have a doctor with experience with Spina Bifida and ALSO understands that you are an individual. Have him or her care for the medical aspect of this disease, while supporting you in your goals.
I will say one thing about the negative ones,though. The worst doctor I ever went to, also helped me out the most. His doom and gloom attitude pissed me off so much that I was determined to get better just to prove him wrong:)
Use every experience that you have with the medical community, to boost you up. This is you life, spina bifida or not. Make a decision to be happy, healthy and to go for your dreams.