09/01/2023
We have the privilege of celebrating 5 years of bringing awareness to the rare disease of Hirschsprung Disease. Join me in doing so as well!
Hirschsprung Disease is lack of ganglion cells that work in a wave like motion to push your stool to your a**s. Ganglion cells start in your stomach and end in your a**s. Most HD patients (1-5000) are only missing cells in large intestine. While others (1-50,000) are missing cells in small intestine and or stomach which adds another title to the rare disease called Total Colonic Hirschsprungs Disease. When the cells are missing in the small intestine it also gives the person another rare disease called Short Bowel Syndrome. Itโs a double whammy. HD is prominent in boys and rarely affect girls. There is no cure for any form of HD just a strict bowel management plan that doctor and patient will tweak weekly, monthly or yearly.
Brayden and many others need a cure or simply more answers and knowledge. MOST DOCTORS DONT HAVE A CLUE ABOUT HIRSCHSPRUNG DISEASE. Too many babies are dying from being misdiagnosed or doctors just giving up because they simply just donโt have a clue. Brayden was given up on. His doctor expressed a lack of wanting to learn or help him. Thankfully we were able to advocate and find the best surgical team and doctors for him.
These warriors need advocates, help advocate and spread awareness.
If you know anyone who has HD, the 2 top of the line GI hospitals are Boston Childrens and Cincinnati Childrens. Both have doctors who only work with HD and TCHD and SBS patients.