Hirschsprung's Disease

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New here

#Parenting I am a mom of a 9 year old that has hirschsprungs disease, autism and adhd. He had a ileostomy placed on March 14th this year. A challenge learning our new way of life. Keeping him hydrated is the hardest part.

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HirschsprungsDisease 5y

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Mighty has saved my mind

I absolutely can not believe I found Hirschsprungs on this app. I joined because of the fibro and anxiety issues. My mind is so jumbled all the time. I’ve never met anyone else with hirschsprungs before and no one quite gets it so I haven’t talked about it in YEARS. I feel slightly alone. But just out of curiosity I searched it and there it was. I am so very very excited to join this page and read about everyone. I also hope to give some insight to parents or care takers with kids who have this. How it will affect them into their teen years and twenty’s. I am hoping to post more later about my surgeries and my hospital stays!! (Picture above of me in bed because some days I’m bed ridden 😂)
#HirschsprungsDisease #Anxiety #Fibromyalgia

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Boy with Down syndrome smiling at camera

Smriti Zalpuri Kumar

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Down Syndrome

Why Doctors Need to Change the Way They Deliver a Down Syndrome Diagnosis

They say when you become a mother, your life changes completely. I had heard this all my life, but on the 1st of August 2017, I started to believe it, too. I still remember the moment my precious little angel came into this world. But unlike many other mothers’ experiences, my moment wasn’t happy. It [...]

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ChronicIllness 5y

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Raising awareness of a chronic ill mom and critical ill son

My son has heart aneurysms (critical illness) post late late diagnosed Kawasaki Disease. I was born with Hirschsprungs Disease a Chronic Illness resulting in 15 surgeries. I also have a slew of hypothyroidism, Endometrosis, PTSD, PNOP, Chronic Pain.
Together we fight. Together we are strong. #ChronicIllness #ChronicPain #KawasakiSyndrome #HeartCondition #Endometriosis

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Anxiety 5y

Struggling to survive

I don’t understand how I even got here. I’m extremely tired. My life of mental and physical health issues is like a roller coaster with many twists and turns but it never stops but when it seems its going here comes a drop!!! Hair swings back, air smacks wide and hard in the face, heart drops to the stomach holding on for dear life. Looking around on the way back up seeing no one around no other passengers no one conducting the coaster just you on the roller coaster of illness. Even with the medicine, coping skills, and procedures the coaster slows down but it never stops. I just want a friend, a pet, a kid or two a consistent source of income to be on this flow with me and never let go! Had a few but they jump off before the drop hits and says their afraid of heights so Am i but I don’t have a choice I have to be here. I don’t need you to hold my seat belt or rearrange my harness just sit beside me through the loops and hand me some support or two. #Anxiety #Depression #HirschsprungsDisease #Ostomy #PTSD