Hirschsprung’s Family Connections

hd-ribbon

So what is HD?

HD is a rare condition which affects the nerve cells (known as ganglion cells) of the bowel. The ganglion cells control the muscles of the bowel, and these muscles push along the bowel contents.

There is no known cause for HD, although it can run in families. It occurs in 1 in 5000 babies so is considered a rare condition.

To find out more please follow the link to the hospital website.

Southampton Children’s Hospital – Hirschsprung’s Disease

So who are HFC?

We are a charity set up to provide support for families treated at Southampton Children’s Hospital that care for a child with HD.

We have run a few events and raised some money. X-ray at the children’s hospital now has a new iPad that can be used for distraction when children have long procedures.

Please ask the radiographers if your patient can use it while down there.

One of our members, Zach Best, ran the 2 Kilometre children’s race in Bournemouth to raise money for both HFC and G4 surgery, raising about £400 in total.

Many families struggle when their child is diagnosed with Hirschsprung’s. It is a condition that no one has heard of and they struggle to tell people as no one wants to talk about poo.

One of the main aims of HFC is to connect families so that can provide support for each other. Allowing new and old families to share concerns and ask others for opinions.

Many of the parents talk about the nursing staff that were on the wards when their child had surgery. The often comment that it would be nice for the staff to see their children when they are out of hospital and well.

If you look at the blog page on the charity website, you can see some of the videos of our events.

http://www.hirschsprungsfamilyconnections.co.uk/

IF you fancy getting involved or coming to one of our events please lets us (surgical nurses) know.

If you have any questions about Hirschsprung’s disease or HFC just shout.

 

Karen, Jo and Rhoda

 

 

 

 

 

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