Please Note you can click on photo’s and Documents to make them bigger. please note also that the early ones may not enlarge, but the newer one’s will.

On a Personal Note

This website is Dedicated to the Memory of my late Nan, who without her comment, and money left in her will, to me, then none of what we are doing would have happened. and this is why we take nothing from this idea everything goes to bringing about change.

Nan’s message read  …… You could change the world if you put your mind to it, Stephen.

me

Hello, if you have not been here before, welcome to my website, my name as you can see from above is Steve Wyles, I was born in 1962 in the UK unable to swallow, I have put this site together to bring as much info I can find into one place, for parents and adults like myself to find out more instead of trawling the internet looking, my own story can be found on this site, in only 15 months I took this website, one of 3.5 million with near same domain name to the first page on google, showing Doctors that I am very dedicated to doing this site, and in doing so have some leading USA Doctor’s joining me and my very small team, in putting out the first ever tried world survey, hopefully, more will follow in time, I would like to thank those involved, for believing in me. For you reading this, I am also involved in other ongoing ideas, that should help all, born unable to eat.

My Facebook page:- https://www.facebook.com/profile.php?id=100004980497666

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We Talked and the Doctors listened

So who are we, I hear you ask?

Steve Wyles Adult-born unable to swallow in England in 1962, I put this site together to help New Parents understand what might lay ahead.

Sue Paul, Wife of an Adult with Ea-Tef, USA who became my Friend before his death from lack of data on his condition, you can see his photo lower down, Sue like myself wanted to help the children, following Chris and Myself.

Bev Stark, a Mother of a 13-year-old English boy, who struggles every day with conditions linked to being born unable to swallow. With joint effort from myself and Bev, we put together the biggest facebook support group in less than a year.

Screenshot_2017-05-10-22-52-40-1-1

 What you’re about to see below is part of a much bigger research project, which is ongoing, and still taking in data from around the world, it is the biggest ever tried, so please take the opportunity to help these Doctors, like the many Families and Adults, who have already taken it. 

We linked up with a team of Doctors in the USA from, Center for Esophageal Diseases and Swallowing. As I believed this teaching Hospital was the right place to push forward the idea.

06th – 09th May 2017

DIGESTIVE DISEASE WEEK ANNUAL MEETING 2017

DDW is Digestive Disease Week. There is the opportunity to uncover the most recent advancements in the field of Gastroenterology, Endoscopy, Hepatology, Digestive System and Gastrointestinal Surgery. DDW 2017 is one of the biggest events and organised annually. There are more than 14000 attendees will participate in this meeting in this year. DDW 2017 will be held in Chicago. May 2017 at the DDW is where our team of Doctors presented the two medical papers and the abstracts as large posters, picked by the team @ DDW from 1000’s of applicants. This is the YouTube Channel we were given by them to run on this website, it will explain more.

For me just searching using my name, and that of Sue Paul to see our names as Co-Authors was a real honour, as the two of us put the survey together, found the team of doctors from CEDAS, Center for Esophageal Diseases and Swallowing, at the UNC in USA, allowing us to work with Dr Dellon and his team, who with us came up with the finished survey questions, that you now see on the survey found on this website.

abstracts for medical papers

Abstracts for medical papers

Please note that included on both these posters you will see this website address. As it was passed by the IRB board to link the survey from, (IRB stands for Institutional Review Board. The IRB is a committee that provides ethical oversight and ensures the protection of the rights and welfare of humans taking part in research studies)

Eluri S, Kochar B, Reed CC, Paul S, Wyles S, Meyers MO, Dellon ES. Factors Impacting Patient-Reported Health-related Quality of Life in Adolescents and Adults with Esophageal Atresia and Tracheoesophageal Fistula. Gastroenterology. 2017; 152 (Suppl 1): S741-S742 (Mo1656). Poster presentation at DDW, 2017

poster - burden

 

 

 

 

 

 

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poster 2nd 2017 (3)

http://www.gastrojournal.org/article/S0016-5085%2817%2931659-1/fulltext#.WS_p1OQofBE.facebook

Click to enlarge.

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Eluri S, Kochar B, Reed CC, Paul S, Wyles S, Meyers MO, Dellon ES. High Burden of Persistent Gastrointestinal Symptoms and Ongoing Morbidity in Patients with Esophageal Atresia and Tracheoesophageal Fistula. Gastroenterology. 2017; 152 (Suppl 1): S431-S432 (Sa2049). Poster presentation at DDW, 2017.

poster - QoL

 

 

 

 

 

 

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Screenshot_2017-05-01-18-38-46-1

http://www.gastrojournal.org/article/S0016-5085%2817%2932577-5/pdf#.WS_oN5irsrU.facebook

Click to enlarge.

Screenshot_2017-06-01-11-16-50_resized_1 (2)

NOTE both have Citations attached

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Steve Wyles

Author, click link below to see

http://www.gastrojournal.org/action/doSearch?searchType=authorLookUp&author=Wyles,%20Steve&prod=HA

Next step, from this, comes two medical papers, to be written up by Dr Dellon’s team and published later this year in a reviewed medical journal.

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This Site is Run by Parent’s for Parents we are not Doctor’s What is found on the enclosed pages is from our internet research, bringing you a mass of info and placing it on here. We do get sent info from different sources, and can not confirm every single thing you read, but at the end of the day, you only have to ask your Doctor to put your mind at rest. PLEASE NOTE

*The resources on this site should not be used as a substitute for professional medical care or advice.*

THIS IS A DISCLAIMER FOR THIS SITE
This website is run for Parents by Parents of Conditions found within this site, and not linked to Charities, or receiving funds, or making a profit, funded by ourselves.
We are not here to cause any upset to other's, only to RAISE AWARENESS for OUR Children's, Rare Condition's. With the Help of World Doctors.
Although we do our best not to use copyrighted wording this site is only bringing all that is floating around on the world internet into one place to be able to HELP Parents and people trusted in looking after our Children.

Building a Site where Parents can understand the way Doctors talk using photo's, video, info sent by Doctors. Not used to make money, just to help Support the Parents understand.
Bringing the info together to build this unique site, has been a god send to families one Consultant emailed us.
(Anything found here, is here to help other's)

Liability:
For documents found on this WEBSITE we do not warrant or assume any legal liability or responsibility for the accuracy. Plus the resources on this site should not be used as a substitute for professional medical care or advice, but rather to provide users with information to better understand their health or their Child's diagnosed disorders. Specific medical advice will not be provided.

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