Even though last month was the awareness month for Hydrocephalus I was a slacker. I wanted to share a few facts.
- 1 MILLION Americans live with Hydrocephalus
- All ages are affected and some are not diagnosed until later in life.
- One in every 1000 babies are born with hydrocephalus
- It is the most common reason for brain surgery in children
Although it is treatable...
- There is no cure and it is a chronic, life threatening condition
- The only know treatment is neurosurgical and the treatment hasn't changed since 1952
- 40,000 surgeries are performed each year. That is one every 15 minutes.
- In adults, this reversible dementia and gait disorder often goes untreated and undiagnosed.
There is SO much that can be done...
- Even after initial treatment, many people face repeated life surgeries and diminished quality of life.
- Surgical treatment costs exceed 1 billion per year
- Federal Government spends less that 1 MILLION per year on research.
This condition is not a fun one. It makes my tummy hurt every time we have the pukes, a fever or whatever. Shunt malfunctions slowly kill my baby. Within 12 hours of starting to malfunction he is so sick and his heart starts to slow down.
Please..... Support your local area hydrocephalus association.
1 comment:
I don't watch much tv these days but when my preemies were babies the Doctor show "ER" did an episode where a couple gave birth to a 22 week preemie and held him until he passed. I cried and cried and cried. There but the grace of God...
They had an incredible song on that episode and I ran out and bought the CD- something I had NEVER done because of a show. The song was "Sand and Water" by Beth Nielsen Chapman. It's still touching to me.
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