Who are we?
The Hirschsprung's & Motility Disorders Support Network (HMDSN), is an organization that makes it possible for of ordinary people and families, who's children suffer from Hirschsprung's Disease and other Gastrointestinal motility disorders to support each other. We want to help parents which children suffer from these Secret Diseases.
What type of disorders are these?
Gastrointestinal motility is defined by the movements of the digestive system and the ability to rid the body of unneeded waste. When nerves or muscles in any portion of the digestive tract do not function correctly, symptoms develop related to motility problems. These symptoms may include constipation, abdominal distention, reflux, nausea, vomiting, and diarrhea. The most common disorders HMDSN encounters are Hirschsprung's Disease (HD), Intestinal Neuronal Dysplasia (IND or NID) and Intestinal Pseudo-Obstruction (CIP). While the severity of these disorders vary, each family will usually experience some of the same feelings. That is where YOU come in! Offering support and encouragement to one another can often make a world of difference in our family's lives day to day.
Is this serious?
This is not something we can answer, we are not doctors. These problems can be the result of many different problems ranging from the not so serious to the very serious. In all cases you should get it checked by your local doctor, if you are not satisfied with what you are told then insist on seeing a Gastrointestinal specialist. The odds are that your child's problems will not be serious. Serious Motility problems are rare, for Hirschsprung's the ratio is 5,000:1 children have this problem.
What can we not do?
- We cannot recommend treatment.
- We cannot recommend doctors.
- We cannot say 'everything will be fine'.
So please don't ask us these things.
What can we do?
- We are here to help & support to each other.
- We can offer advice. To this end we have produced a pamphlet found here
- We can give you a place to shout when things get too much.
- We can give you a shoulder to cry on.
- We can give you an audience to tell you good news to.
- We can cheer with you.
- We can laugh with you.
- We can also show how your kids most likely will grow up into strong healthy adults.
- We can tell you that over 80% go on to give good and satisfying lives.
What can you do?
- If you like what you find you can join our group.
- You can use the menu to help steer you around the site.
- If you are looking for anything specific then you can use the Search facility.
HOW can you do?
- List server
- Forum
- Meetings
- Newsletter
This is where you send an email and all members receive it and who every has advice will respond to you. To join this them please fill out the application form
You can post your question here and any replies will be seen here. We are now have a forum for other motility disorders such as anorectal malformations. To look at the forum please follow this link.
We encourage members to arrange meetings as we feel that both parents and children get so much out of them. We as a group will give you all the help and publicity we can. All meeting are advertised on our EVENTS Page.
We have not published a newsletter recently but will hope to do so before the year end. You can see our old ones on our Newsletter Page
It you can't find what you want then please contact one of the HMDSN Staff
If you have problems with the menu then please go to the website map
What's New
Meeting in N.E. Scotland.
Details can be found on our EVENTS PAGE
A new Forum with more Motility Issues - FORUM
HMDSN have produced a pamphlet about HD Read it Here
We have pictures of Teens and adults with HD as they mature. Growing Up
Catch it while it is up there. A TV item on a Aria who has Total Intestinal HD Aria MacDonald
Here is a man who should be an inspiration to all parents with HD children, James Connolly. Visit this site and see what can be done by HD Kids.