• What is Hirschsprung's Disease? • Mickey Button Care
• History of HD • TPN Line Care
• Symptoms of HD • Hirschsprung's Associated Enterocolitis (HAEC)
• HD & the Digestive System • Problems with Defecation after Surgery for HD
• HD & the Nervous System • Diaper Rash after a Pull-Through
• Causes of HD • Probiotics & Hirschsprung's Disease
• Genetics & HD • HD & Gastroenteritis
• Syndromes Associated with HD • HD & Decreased Immunity
• Diagnosis of HD • Bowel Management & HD
• Types of HD • Preventing Constipation in the child with HD
• Operations for HD • HD & Laxatives
• What to Expect after the Operation • HD & My Son Kellen
• Dilatation & Irrigation Guidelines • Helpful Websites
Genetic research on Hirschsprung's Disease at Johns Hopkins University
Not only will the book help you to be well-informed about Hirschsprung'sDisease, but your purchase will be helping children born with this rare disorder. All of the profits from this book will go to the Hirschsprung's Disease Gift Fund at the Institute of Genetic Medicine at Johns Hopkins University School of Medicine.
Dr. Aravinda Chakravarti's laboratory at Johns Hopkins University has been investigating the genetics of Hirschsprung's Disease (HSCR) for fifteen years. His research has played an important role in identifying several genes involved. However, there is more work to be done in clarifying the geneteic basis of HSCR. The purpose of the study is to continue the search for genes involved in Hirschsprung's Disease and to further characterize the known genes and the interactions between them. The study will hopefully lead to a better understanding of the genetics of HSCR and, further down the road, improved diagnosis, treatment, and genetic counseling for those born with Hirschsprung's Disease.
If you are interested in finding out more about genetics and Hirschsprung's Disease, contact Courtney Nichols, (Genetics Counselor, John Hopkins Univeristy, Institute of Genetic Medicine), by clicking on the link below.
Dr. Marc Levitt's Bowel Management Program
After surgery for Hirschsprung's Disease, some children have problems with constipation or diarrhea. This can be a frustrating and scary time for parents of children with HD. Dr. Mark Levitt, the Associate Director of the Colorectal Center at Cincinnati Children's Hospital, has helped design one of the most successful Bowel Management Programs in the U.S. and abroad. Dr. Levitt and Dr. Pena have treated over 500 patients and have a 95% success rate with their Bowel Management Program (Levitt & Pena, 2007). Please click on the link below to visit The Colorectal Center at Cincinnati Children's Hospital Medical Center.
HMDSN (Hirschsprung Support Network)
The HMDSN is an excellent way to communicate with other parents dealing with Hirschsprung's Disease. Parents give advice on how to deal with the many problems kids with HD can have. Because these parents deal with Hirschsprung's Disease on a daily basis, they are able to give very good suggestions to other parents in the same situation. Parents can also learn about various resources that may be helpful to them. I highly recommend this site!
Pull-Thru Network
The Pull-Thru Network is dedicated to providing information, education, support and advocacy for families, children, teens and adults who are living with the challenges of congenital anorectal, colorectal, and/or urogenital disorders and any of the associated diagnosis.
The Pull-Thru Network allows families to come together for yearly functions where they can learn more about how to live with their disorder. A monthly publication is full of very useful up-to-date information about a variety of topics - including Hirschsprung's Disease. Families can also communicate online through the website. This is a great organization! I recommend subscribing to the newsletter.
There is a new yahoo group for people in the United States who have questions about Hirschsprung's Disease. The goal of the group is to provide a friendly environment in which to discuss topics related to HD. To join the group, please follow the link below.
Please proceed to the book order page to purchase a copy of Hirschsprung's Disease - Solving the Puzzle.
Thank you,
Nicole Murphy
