Greetings!

Hi guys! 


My name is Erin.  I am 28 years old and live in the Florida Panhandle.  This is a blog about me.  What I think of things, my feelings, fears, hopes, and dreams.  I'll even sprinkle in some factual information so that you know where all this comes from. Let me start with some basics.  As I said, I'm 28 and live in Florida.  I was born it with a disability called Spina Bifida (also referred to simply as SB many of us afflicted with it).  The specific kind I have is called myelomeningocele. My lesion extends from my sacral spine all the way up to the 12th thoracic vertebrae. 


I have found that often times, people do not understand what Spina Bifida actually is; so I will explain it to you so you can at least have a basic understanding of the disability.  Spina Bifida is the most common permanently disabling birth defect in the United States.  It occurs when the spinal column of the baby doesn't close during those first crucial weeks of pregnancy.  How Spina Bifida effects someone is as individual as the person themselves.  


There are different three different types of Spina Bifida: Occulta, Meningocele, and Myelomeningocele.  


1) Spina Bifida Occulta is often called hidden Spina Bifida.  The nerves are usually normal and 
there is no opening on the back.  Of the three types, Occulta is considered to be relatively harmless due to the lack of overwhelming and obvious symptoms at birth.  A baby born with this type of SB has a small gap or defect in the vertebrae that make up the spine.  Neurological deterioration progresses so subtly that it often does not become evident until later in childhood or even into adulthood.  However, in many instances, this type of Spina Bifida is so mild that there are no problems with spinal functioning.  It is for this reason that SB Occulta can be diagnosed at any age or not at all. 


2) Meningocele happens when the protective coatings (meninges) come through the open part of the spine, like a sac.  The closest thing I can acquaint this to at the moment is the amniotic sac that surrounds the baby during pregnancy. Sometimes you hear on television them talking about the mother having a bulging bag of waters- the meninges coming through the opening in the spine is kind of like that.  In this sac is cerebrospinal fluid, and there is usually no nerve damage to the spinal cord though babies born with this type of SB may suffer minor disabilities and additional problems may develop later in life.


3) Myelomeningocele happens when not only the meninges, but also the nerves of the spinal cord comes through the opening in the spine.  This type of SB is by far the most serious type.  Though people affected with the other types certainly have their own difficulties, when the nerves of the spine are damaged, this can cause paralysis of the lower limbs.  Other problems can include: bowel and/or bladder incontinence, pressure sores (aka decubitus ulcers or bed sores), hydrocephalus  due to the build up of spinal fluid on the brain, which requires a shunt to be implanted and, shoulder/neck problems from using a manual wheelchair or other mobility aid to get around.  These are just a few of the notable problems that this type of Spina Bifida comes with.  


Through the course of this blog, I'll tell you more about these issues, how the affect me specifically, and how I am overcoming them. I will also include links to websites that I find helpful.  I know this is very short and I haven't told you much about me personally, but I will in my next post.


Take care of yourselves and I will talk to y'all soon! 


xoxoxo
Erin