How do I find a center of excellence in Hirschsprung Disease?
To find a center of excellence in Hirschsprung disease, start by connecting with one of the Hirschsprung support groups and work with them to find a gastrointestinal or gastroenterology center near you. These centers specialize in problems with the stomach and intestine. Your pediatrician or other medical professionals may also have recommendations so speak with them to learn more.
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What specialist doctors should I see with Hirschsprung Disease?
Someone with Hirschsprung disease will most likely have to see a surgeon to remove the part of the colon that does not contain nerves. The colon, or large intestine, is the last part of the digestive system and transports digested food and liquid from the small intestine to the rectum. If constipation or incontinence occurs after surgery, the patient may need to see a gastroenterologist, who treats issues with the stomach and intestines. They may need a laxative or rectal therapies. It also may help to increase the amount of fiber you're getting through your diet. To find a surgeon or gastroenterologist speak with your or your child's physician for a referral.
- "Hirschsprung's Disease" National Organization for Rare Disorders. 2005. https://rarediseases.org/rare-diseases/hirschsprungs-disease/#standard-therapies
- "Hirschsprung Disease" National Institute of Diabetes and Digestive and Kidney Diseases. Jul. 2013. http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/hirschsprung-disease/Pages/ez.aspx
- Ask a ThinkGenetic Counselor, January 13, 2017
If I have Hirschsprung Disease, what should my doctor know about managing the disease?
If you have Hirschsprung disease your doctor should know that surgery is usually required to treat Hirschsprung disease. They should also know to look out for signs of constipation and incontinence after the surgery is performed.
- "Hirschsprung’s Disease" National Organization for Rare Disorders. 2005. https://rarediseases.org/rare-diseases/hirschsprungs-disease/#standard-therapies
- Wesson, David. "Congenital aganglionic megacolon (Hirschsprung disease)" UpToDate. May 2016. Web. 14 Jun. 2016. http://www.uptodate.com/contents/congenital-aganglionic-megacolon-hirschsprung-disease?source=search_result&search=Hirschsprung%E2%80%99s+Disease&selectedTitle=1~66