Tuesday, December 21, 2010

Hirschsprung's Disease Awareness

My nephew was just diagnosed with Hirschsprung's Disease. It is a very rare disease that can be genetic or it can be just a fluke thing.  I'm pretty sure that it's genetic this time because both of my boys have this disease too.  The local paper where my sister lives wrote a story about my nephew.  Check it out HERE

He goes in for surgery today.  I'm praying he does not have to have a colostomy like my two boys did.  I pray that the Lord will watch over him, the doctors and the entire hospital staff.  I pray that the Lord will watch over my sister as she sits and waits.  The surgeon doesn't even know what type of procedure he will have to perform.  That's the tricky thing about HD.  There isn't a "one trick fixes everything" for HD.  
This is a disease that is present at birth, you don't develop HD.  My oldest son was diagnosed at 2 days old and had his colostomy placed at 3 days old.  He had a severe enough case that he presented signs within 24 hours.  But my 4 year old has such a short segment of his intestines that is affected that he wasn't diagnosed until he was 3, just like my cute nephew.  

I just want to raise more awareness about this rare disease.  My personal belief is that there are lots of people suffering with this disease than doctors realize.  So if you have a child who has been chronically constipated since birth or shortly after go and see the doctor, especially if nothing (miralax, etc.) is working.  Find a good pediatric GI doctor and get your child checked out!
I'll keep everyone posted about my cute nephew.

2 comments:

Aaron & Erin said...

Ellis went in for surgery today? I had no idea. I'll keep him in my prayers.

Lesia said...

prayers for you and them. smile

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