WHAT IS HIRSCHSPRUNG'S
Hirschsprung Disease occurs when nerve cells (also called ganglion cells) are absent from the lower part of the colon. The segment without nerve cells is called the aganglionic segment and it always starts at the bottom of the colon affecting the lower end. It can also extend up the colon, even into the small intestine. The absence of ganglion cells leaves a portion of the colon essentially paralyzed and unable to propel waste products along its length. This is the reason why babies born with Hirschsprung’s disease are often unable to
pass their first “meconium” stool and children diagnosed later in life have severe constipation. In addition to having difficulty passing
stool, infants and children with Hirschsprung’s disease also typically have abdominal distension and sometimes develop vomiting and
loss of appetite.
WHAT IS HIRSCHSPRUNG'S
Hirschsprung Disease occurs when nerve cells (also called ganglion cells) are absent from the lower part of the colon. The segment without nerve cells is called the aganglionic segment and it always starts at the bottom of the colon affecting the lower end. It can also extend up the colon, even into the small intestine. The absence of ganglion cells leaves a portion of the colon essentially paralyzed and unable to propel waste products along its length. This is the reason why babies born with Hirschsprung’s disease are often unable to
pass their first “meconium” stool and children diagnosed later in life have severe constipation. In addition to having difficulty passing
stool, infants and children with Hirschsprung’s disease also typically have abdominal distension and sometimes develop vomiting and
loss of appetite.
WHAT CAUSES IT?
Hirschsprung’s disease is caused by the failure of nerve cells to reach the bottom end of the colon.
These nerve cells develop very early on in the embryo. These cells migrate through esophagus making a long journey along the intestinal tract to get to the stomach, small intestine and finally the colon. Many genes are required to make this migratory journey possible and if any of these genes function abnormally, then the nerve cells are unable to complete their journey, leaving the lower part of the colon aganglionic and unable to function normally.
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HOW IS IT DIAGNOSED
If you have concerns, your doctor can order a contrast enema.
HOW IS IT DIAGNOSED
If you have concerns, your doctor can order a contrast enema.
A contrast enema is a radiological study where a doctor inserts a rectal catheter, injects "contrast" fluid and takes x-rays of the abdomen.
The only way to get a definitive diagnosis is through a rectum biopsy. This painless procedure is generally performed without anesthesia. A pathologist examines the biopsy to search for nerve cells - of none are present, Hirschsprung's Disease is diagnosed.
ABOUT REACH
REACH was established in 2011 by the Schnadig family. Their youngest son Adrien has total colonic Hirschsprung's Disease and Down's Syndrome.
ABOUT REACH
REACH was established in 2011 by the Schnadig family. Their youngest son Adrien has total colonic Hirschsprung's Disease and Down's Syndrome.
The Schnadig family wanted to help Adrien and other children living with Hirschsprung's Disease.
Adrien is doing well. Of course, he still has setbacks with bowel function.
Together with Dr. Allan Goldstein—a pediatric surgeon at Massachusetts General Hospital in Boston—the Schnadigs established REACH as a non-profit organization committed to improving the lives of children and families living with Hirschsprung’s Disease.
LET’S MEET THE BOARD…
The REACH board is composed of individuals across North America who all have a connection to Hirschsprung’s in one way or another whether it be as parents to an HD child, or they work in the medical field closely with Hirschsprung’s.
The board has grown organically throughout the years, adding marketing and fundraising experts, as well as doctors.
Everyone brings something different and unique to the REACH table!
LET’S MEET THE BOARD…
The REACH board is composed of individuals across North America who all have a connection to Hirschsprung’s in one way or another whether it be as parents to an HD child, or they work in the medical field closely with Hirschsprung’s.
The board has grown organically throughout the years, adding marketing and fundraising experts, as well as doctors.
Everyone brings something different and unique to the REACH table!
Eric Schnadig
Concord, MA
Founder & Chairman
Eric Schnadig is married to Isabelle and the father of four children. Adrien, their youngest, has Downs Syndrome and total colonic Hirschsprung’s Disease. Eric is CEO of Tervela Inc., a Boston-based high-tech startup. Eric and Isabelle founded REACH after experiencing a need for resources as parents wanting to learn more about the disease and its complications.
Allan Goldstein, MD
Boston, MA
President
Dr. Allan Goldstein is Associate Professor of Surgery at Harvard Medical School and a pediatric surgeon at Massachusetts General Hospital where he directs the Pediatric Neurogastroentorology Program. He has a special interest in the care of children with Hirschsprung’s Disease and leads an active research program that studies causes, complications and treatments for Hirschsprung’s Disease. Married since 1994, Allan and Rachel have three children and live in Newtown, MA.
Isabelle Schnadig
Concord, MA
Founder & Vice President, Treasurer
Isabelle Schnadig is mother to four children. Married to Eric, their youngest son Adrien, born in 2006, was diagnosed with total colonic Hirschsprung’s Disease at five days old. Originally from Grenoble, France, Isabelle is a former economist who excels in the arts and has a passion for painting. Isabelle and her husband are committed to sharing their family’s experience in navigating and coping with this “silent disease.”
Liz Crawford
Winnipeg, MB
Vice President, Marketing & Communications
Liz is the mother of two. Her youngest child Malachi was born with Hirschsprung’s disease in 2008. Liz became involved with REACH in 2011 after launching the social media site, Hirschsprung’s Community, as a support forum for families living with HD. Liz is the CEO of Swish Productions, a fashion marketing and communications agency as well as Swish Model Management.
Jacob Langer
Toronto, ON
Sick Kids Hospital
Dr. Jacob C. Langer came on board in 2016 with REACH lending his skills in clinical and research with interests including neonatal and fetal surgery, minimally invasive paediatric surgery, and the management of complicated gastrointestinal problems in children. He is considered an international expert on the management of Hirschsprung's disease. He has written 300 papers and 70 book chapters, and travels extensively internationally to do operations and to lecture on these and other topics.
Nicole Perry
Colorado, Denver
Community Outreach/Fundraising
Nicole was invited to sit on the Reach board Spring 2018 as result of her on-going fundraising and community outreach efforts, and her strong passion for her kids. Nicole is a mom of three wonderful children, two of which are twins. One of the twins, Benjamin, was born with short-segment Hirschsprung's. Nicole also sits on the Skyridge Hospital's paediatric board, and is determined to raise awareness and educate others about HD. She is highly active on social media connecting with other HD families, encouraging others to share their stories and helping families learn more about HD. Nicole has organized various fundraising events throughout the year in Colorado from small-scale to larger events. So, if you need help fundraising, Nicole is the one to contact!