Hirschsprung’s Disease Awareness Day
15th September 2026
15th September marks Hirschsprung’s Disease Awareness Day.
Read on to discover more about the condition, including what it is, the symptoms, who it affects, real-life stories and why awareness is so important.
What is Hirschsprung’s disease?
Hirschsprung’s disease is a condition people are born with. It slows or stops the movement of poo through the large bowel. Ganglion cells, which are responsible for controlling bowel movement, are absent. Because of this, peristalsis, the motion that pushes poo through the anus (back passage), does not work properly.
What are the usual symptoms of Hirschsprung’s disease?
Symptoms in a baby:
- A delay in passing meconium. Meconium is a thick, dark greenish-brown stool that babies usually pass shortly after birth. This is usually noticed during the first 24-48 hours of life.
- A swollen belly (abdomen).
- Vomiting bile (green liquid).
A serious condition called Hirschsprung-associated enterocolitis (HAEC) may occur. This is where the bowel becomes inflamed. Signs of HAEC can include:
- Complete constipation (not passing wind or poo).
- Watery or explosive diarrhoea.
- Distended abdomen (swollen tummy).
- Rectal bleeding (blood from the back passage).
- Fever (high temperature).
- Drowsiness (sleepier than seems normal).
- Signs of sepsis (see below).
Septic shock (sepsis) is a medical emergency. You might notice a child has some of the following symptoms:
- Difficulty breathing. You may notice grunting noises or their stomach sucking under their ribcage. They may have breathlessness or be breathing very fast.
- A weak, high-pitched cry that’s not like their normal cry.
- They may not respond like they normally do. They may not be interested in feeding or normal activities.
- Being sleepier than usual or are difficult to wake up.
Call 999 or go to A&E if a child is experiencing these symptoms.
Symptoms and signs in an older child can include:
- Abdominal (tummy) discomfort and swelling.
- Vomiting.
- Constipation that continues and does not improve with usual treatments.
- Feeding problems.
- Lack of normal weight gain.
Who does Hirschsprung’s disease affect?
Hirschsprung’s disease is often diagnosed right after birth, but sometimes the symptoms are milder. In these cases, diagnosis can happen later in childhood.
How common is Hirschsprung’s disease?
About 1 in 5,000 babies are affected by Hirschsprung’s disease. For every girl affected, 4 boys are affected.
Where can I find more information on Hirschsprung’s disease?
Our accredited information on digestive conditions and symptoms includes Hirschsprung’s disease. Our Helpline team can also provide information, guidance and support.
Why is awareness of Hirschsprung’s disease so important?
Knowledge and awareness of this condition remain limited, and currently, there is no UK charity dedicated to providing information and support for Hirschsprung’s disease.
We are dedicated to improving public education and raising vital awareness for our guts. We’re joining this awareness campaign to share more information about this condition, including symptoms, diagnosis and treatment.
We’re thrilled to be joining charities and organisations from 18 different countries around the world, who are coming together to raise awareness and increase visibility for the condition. On Monday, 15 September, we’ll be joining 25 patient advocacy groups and seven paediatric surgery associations and hospitals across the world in support of Hirschsprung’s Disease Awareness Day, which takes place during Hirschsprung’s Disease Awareness Month in September. Together, we are stronger!
If you’re a registered charity, advocacy group or healthcare organisation that would like to be part of this collaborative initiative, reach out to hirschsprungargentina@gmail.com to find out more.
How can I help?
You can help us spread the word about Hirschsprung’s disease by:
- Following us on social media and sharing our awareness and information posts. You never know who we might reach and help together. Our social media links are: Facebook, LinkedIn, Instagram, Twitter/X.
- Share your own experience, or a loved one’s experience with Hirschsprung’s disease, with your own circles, and on your own social media channels.
- Fundraise for Guts UK Charity to help us abolish the taboos surrounding digestive health, and get to grips with guts. You can fund life-changing research and empower people to seek help sooner.
