Hirschsprung's Disease Uae

18/03/2020

These are very trying days, we are holding up our breath, connecting more within the family, making sure the kids are attending their online classes, and we eat healthy, move a bit and play a lot. Mum and dad are talking about world's big event at night and keep smiling during the day.
I would like to welcome all the new families that recently joined the page, which intent is to support in case of Hirschsprung in the family and let you all know that I am available to each of you in case you have questions!

14/03/2020

Dr. Alessio Pini Prato from Pediatric Hospital in Alessandria addresses the concerns from the Hirschsprung's mum in the video. Very interesting to listen to! Please share!

29/02/2020

A.Mor.Hi - Proseguimento di Amici di Francesco

07/11/2019

07/11/2019

31/07/2019

During summer when the temperatures are higher are your kids taking minerals or supplement?

15/04/2019

Thank you for who is passing by the group and staying with us, thank you to the new members. To the others who are visiting, if you are interested in the Hirschsprung Disease or affected by it, STAY with us, help us to grow the community, we are here to share experiences.

24/01/2019

1 day ago Seven Bridges from Kentucky took his own life because he was bullied at school. Seven was only 10 years old and he was bullied over his colostomy bag.
I cannot agree more with the fact that having a colostomy bag or an ostomy bag is hard, but in most cases is a life or death matter. More people should know what our warriors are going through, the difficult lives that many of us have to deal everyday with and parents should be always supported. Our thoughts and prayers are with the family.

24/10/2018

24/10/2018

Talking about skin rush and skin burnt these are some of the creams that actually saved our life right after surgery. And we still use some for daily routine. The Himalaya talc is natural and can be found in supermarkets and pharmacies, the green one is the italian version, the best is when it has no fragrance and no alchool. Same with Vaseline, Herbolene is the most natural version of Vaseline. Ilex is a cream that did wonders for us, it creates a layer between the skin and the nappy/panty so it does allow the skin to grow back and be less sensitive and stay clean. Conveen Protact is a special cream based on zinc oxide which is wonderful when applied on skin rush, it does relief the skin and protect. This is my experience, what is yours?

23/09/2018

ALL GOOD?
The all good moment is when worried like always I go to pick up my son from school. True, me and him have a very close relationship - very close. Due to whatever we did together at birth, we have been through surgery, months spent in the hospital, check ups, diets etc etc. When I pick him up I am always scare to hear that maybe he didn t do fine, maybe he has been sick, maybe accidents in the toilet whatever anyway not one day passes without me being worried at pick up time.
We live in Dubai a place made of many cultures and ethnicities living together, many of us do not speak english as first language but sometimes there is a real struggle to get few moments with the teacher to know more about his time at school, struggle to understand what we can do better and what we can do less or more, but one thing I am really sure of.. dear teachers, I am not scared to hear the truth being good or bad, I have energies to fight with him and for.him for whatever challenges await us, the only demand I have is be straight with me, be clear in your thoughts and put your ego on the side because here there is really no need for it.

21/09/2018

Keep up the amazing work!!!!
.mo.rhi

10/09/2018

Short Bowel Syndrome: Gaslini Hospital starts a new treatment that support the growth of the bowel.

At Gaslini Pediatric Hospital (Genoa, Italy) pediatric gastroenteroligists requested AIFA (Italian Pharmaceutical Agency) to access the National Fund for the
treatment with teduglutide for pediatric patients affected by the S-B-S: the treatment will allow patients to partially or completely stop the assisted nutrition.

The full article at the link below, the article is in italian happy to translate:
http://www.gaslini.org/comunicati-stampa/sindrome-dellintestino-corto-al-gaslini-parte-il-trattamento-con-un-nuovo-farmaco-che-permette-la-crescita-dellintestino/

Su richiesta dei gastroenterologi pediatri del Gaslini l'Agenzia italiana del Farmaco (AIFA) riconosce l'accesso al Fondo 5% per il trattamento con teduglutide della sindrome dell'intestino corto (SBS) nel paziente in età pediatrica: il farmaco permette lo svezzamento parziale o completo dalla nutr...

06/09/2018

September is the month for Hirschsprung's Disease awareness - please help me to share it!

Symptoms in newborns include:
No bowel movement within 48 hours after birth
Vomiting
Explosive stools after a re**al digital examination
Swollen abdomen
Constipation and/or diarrhea
Abdominal pain
Intestinal obstruction

05/06/2018

Great news for us based in the UAE!

Cincinnati Children’s and NMC Healthcare have signed a collaborative agreement to bring highly specialized, pediatric surgical expertise to children in the United Arab Emirates at NMC Royal Hospital in Khalifa City, a residential district of Abu Dhabi. Surgical services include congenital, neurological and musculoskeletal disorders.
NMC Healthcare is the largest private healthcare provider in the UAE. Its flagship hospital, NMC Royal Hospital, with a capacity of 500 beds, is the largest private sector hospital in the country and has become the preferred healthcare destination for UAE nationals and Khalifa City residents.
“We are excited about providing healthcare options for the children and families of UAE who require complex surgical procedures but are better served closer to home,” says Dan von Allmen, MD, surgeon-in-chief. “The NMC and Cincinnati Children’s collaboration is the first step in building in-country, pediatric surgical capabilities and improving the outcomes for children of the UAE.”
The agreement includes a series of life-enhancing and potentially life-saving clinics at NMC Royal, provided by the Cincinnati Children’s team in collaboration with the surgical and clinical professionals of NMC Royal. Children in the UAE will receive some services that previously were not available in their country and required extensive travel. Cincinnati Children’s also will provide continuing education programs and physician training opportunities for healthcare professionals at NMC and throughout the UAE.
Recently, the UAE Government named Cincinnati Children’s one of six “best in class” hospitals in the United States.

30/05/2018

The article written by a lovely friend about Hirschsprung Disease:
http://healthonline.healthitalia.it/morbo-hirschsprung-la-storia-giorgio-un-messaggio-speranza-tanti-bambini/

Morbo di Hirschsprung: la storia di Giorgio Era il 23 settembre del 2015 quando Giorgio è venuto alla luce presso Al Zahra Hospital di Dubai. All’apparenza un bambino come tanti altri con il pianto e il sorriso tipico di chi vede la luce del mondo per la prima volta. Nessuno poteva immaginare, in...

27/05/2018

When Giorgio was born he did not pass meconium, then doctors started wondering about Hirschsprung and other diseases. Giorgio was born in Dubai and doctors in Latifa Hospital had a deep understanding about the illness unfortunately seems common here. In Italy is 1/5000 and the illness is defined as rare. I am looking for other mums or dads based in UAE who went through the same to create a strong network where we can share knowledge and advises.