If you put your mind to something anything is possable

After coming up with an idea to try and run the biggest Survey ever tried, we (Sue Paul, myself and my Friend Chris Paul) had to find a research hospital to undertake it, that knew something about Esophageal Atresia in the Adult.

The University of North Carolina at Chapel Hill believed in us, and the idea we had as seen below in their letters of support, for this website etc.

Chris Paul died later from Ea-Tef

One year later Professor Dr. Dellon and I and Sue Paul became authors of two Published Abstracts recognized by the Prestigious DDW (Digestive Disease Weekly see www.ddw.org) in Chicago in May 2017.

Trying something and teamwork will get you places. We tried, we are doing and are continuing to do for EA/Tef and OA/Tof Families and Doctors around the world. Thank you, physicians and families, for your past present and continued support.

United We Stand.

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 a near same domain name to the first page on google, showing Doctors across the World, that I am very dedicated to doing this site. We Sue Paul (more on who Sue can be found lower down) have gained the respect of World Doctors and Surgeon’s, opening doors for us. We are also involved in other ongoing ideas, that should help all, born unable to eat.

 

2016 – 2017

 

As you will of seen on the Front Page of this website near my photo, around the bottom I talk about having TWO USA Medical Papers with my Name on, this came about after Sue Paul and Myself came up with an idea, then after phoning the USA to talk to Dr. Dellon at a meeting that Sue was at, I asked the question that then leads to us both becoming Authors of the two USA medical papers found lower down on this page.

 

Ea-tef and Tof-oa DNA Global Study

 

In late 2017 we are now involved with a DNA Study team located in New York USA, the team are:-

 

The CARE Study’s team works out of Columbia University Medical Center. It is comprised of accomplished experts in their area of study. The principal investigator of the CARE Study is Dr. Wendy Chung who is a clinical geneticist. The co-investigators are Dr. William Middlesworth, the Director a pediatric surgery, Dr. Julie Khlevner and Dr. Joseph Picoraro, who are both pediatric gastroenterologist.

 

The study coordinator is Priyanka Ahimaz, a board-certified genetic counselor.

https://www.columbiadoctors.org/wendy-k-chung-md

http://columbiasurgery.org/william-middlesworth-md

http://www.nyp.org/physician/jkhlevner/

http://www.nyp.org/physician/picoraroj

Priyanka Ahimaz, CGC Senior Genetic Counselor Coordinator @ Columbia University Medical Center.

Sarah Stewart, Genetic Counseling Intern, the CARE study Research Assistant.

The LINK to this Study can be found on the Front Page of this Website, Click on it and then Contact the Team, fill out the online form.

 

Please find below letters of support from leading USA Professors of medicine

Meet Michael O Meyers

Please find enclosed a letter sent to our team here in England and USA by,

Michael O Meyers M.D Professor of the Surgery Department, at the University of North Carolina U.S.A.

 

SPECIALTIES
GI malignancy including esophageal, gastric, colon and rectal cancer, liver cancer, thyroid and parathyroid disease and breast cancer-related procedures.

Please read his letter of support for this website and the small team that brings you the content found on it.

Dr. Dellon received his undergraduate degree from Brown University and his medical degree from Johns Hopkins School of Medicine. He completed internship and residency in Internal Medicine at Massachusetts General Hospital. After residency, he remained at Massachusetts General for two years working as a Hospitalist and Assistant in Medicine as well as an Instructor at Harvard Medical School.

He subsequently moved to Chapel Hill and completed both a clinical and a research fellowship in Gastroenterology at UNC, during which he received a master’s degree in Epidemiology from the UNC School of Public Health. His clinical training has also included experience with endoscopic retrograde cholangiopancreatography and endoscopic ultrasound.

 

Dr. Dellon has been at the Center for Esophageal Diseases and Swallowing since 2008.

Dr. Dellon’s main research interest is in the epidemiology, pathogenesis, diagnosis, and treatment of eosinophilic esophagitis (EoE). He also has research interests in advanced endoscopic techniques. He is a member of several professional societies, including the American Gastroenterological Association, the American College of Gastroenterology, the American Society of Gastrointestinal Endoscopy, and the North Carolina Society of Gastroenterology.

Dr. Dellon receives research funding from an American College of Gastroenterology Junior Faculty Development Award as well as an intramural NIH KL2 Career

 

Papers Dr Dellon has published

http://www.ncbi.nlm.nih.gov/pubmed?Db=pubmed&Cmd=DetailsSearch&Term=Dellon+ES[Author]

(unable to eat)

 

On a Personal note

 

We the team at www.birth-defect.org are working with a research team at the University of North Carolina at Chapel Hill, in Chapel Hill, North Carolina, USA, on an exciting new project.

 

The dedicated professionals at the Centre for Esophageal Diseases and Swallowing are dedicated to further studying esophageal atresia and related swallowing disorders and have agreed to work with us in spreading awareness for Ea-Tef and Tof-oa and searching for solutions.

The following link will lead you to their center and advances in effectuating modern treatment options with collaboration and ongoing research. More details with are forthcoming as they unfold.

 

 https://www.med.unc.edu/cedas

 We are grateful for the support of these doctors willing to help us. This site is all about getting answers to difficult questions. If you have any questions for the team, please contact us at:

The out come of an idea

Our Posters as Presented at the DDW 2017

DDW is Digestive Disease Week, in the USA there was 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 organized annually. There were more than 14000 attendees and was held in Chicago, May 2017. At this years DDW, 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.

For me just searching using my name, and that of Sue Paul to see our names as Co-Authors was a real honor, 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 the USA, allowing us to work with Dr. Dellon and his team, came up with the finished survey questions.

 

 

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

 

Please note that included on both the posters was this website address. www.birth-defect.org

As it was passed by the IRB board to link the survey form, (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.  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

 

NOTE both have Citations attached

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

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

These Posters can be seen below with the Doctors standing alongside them at the DDW 2017

 

Steve Wyles

Author, click the 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.

 

Sue Paul and I (Steve Wyles) are so proud at getting our idea to this point. We are just ordinary people, not Doctors, but look what we put together, the idea, the team of Drs. from one of the best research centers already looking into why Esophageal Atresia and Tracheoesophageal Fistula occurs at Birth.

 

The team from the UNC are from the Center for Esophageal Diseases and Swallowing.

 

We would like to thank all the Support Groups and Parents that took part, allowing the Drs. data to work with.

Named as Co-Authors

Ea-Tef Doctors show support for Website birth-defect.org

This site provides a valuable resource to patients and families who have EA-TEF & TOF-OA, and associated anomalies. Not only does it provide information on diagnosis and treatment, but it provides valuable insights and networking for patients and families who may feel isolated or lost in dealing with the complex issues they may face. It is a great resource to get information and support.

– Doctor / Surgeon Steven Rothenberg

Happy to endorse the site. It is a great service to patients, families and caregivers of children with complex esophageal and airway anomalies. You have created a wonderful virtual community for people to gather and share the frustrations, challenges, and victories associated with living with esophageal atresia.

– Dan von Allmen, Professor of Surgery, University of Cincinnati

Ea-Tef Doctors show support for Website birth-defect.org

Soy testigo del grandioso esfuerzo que ha hecho Steve de conjugar una enorme información para la orientación de la comunidad mundial de familias y de niños nacidos con AE y FTE .

 

No existe otro espacio en el
Mundo que llene tanto vacío existente alrededor de este gran problema , convirtiéndose en el sitio por excelencia para renacer la esperanza de madres y familias desesperadas , convirtiéndose en esa tabla de salvación para conocer , orientarse y tomar las mejores decisiones .

Gracias Steve y Sue por este gran aporte a esta necesitada comunidad.

– Dr Cristobal Abello MD Pediatric Surgeon Master in Pediatric and neonatal MIS and Terapeutic Endoscopy Profesor of Pediatric and Surgery North University and Metropolitan University of Barranquilla Colombia. Scientific and team director of the CMIpediatric International Clinic of Barranquilla Colombia

Translated from Spanish with Google.

 

 

I am witness to the great effort that Steve has made to conjugate an enormous amount of information for the orientation of the world community of families and children born with AE and FTE.

 

 

There is no other space in the world that fills so much emptiness around this great problem, becoming the place par excellence to be reborn the hope of desperate mothers and families, becoming that table of salvation to know, guide and make the best decisions.
Thanks Steve and Sue for this great contribution to this needy community.

Ea-Tef Doctors show support for Website birth-defect.org

7-07-18
I was sent this Email by an Indian Surgeon Wishing to support the work we do on this website and the group we run. I have just copied the email to this page.
Dr/Surgeon wrote as follows I don’t know of any patient helping patients all over the world? I don’t know of any social media platform where patients from all over the world come and seek help. I find it surprising that a patient is running the group and bringing doctors and patients together on the same platform.
www.birth-defect.org is a platform like that. Patients from more than 100 countries visit and get so much support from other patients and doctors. For parents, the biggest trauma ever can be the poor health of their child, and this is what the parents get most from here, mental support.
That many other children are getting treated and they are doing fantastic in their life. People get hope for their newborns, and it works. Hope is the most significant support for anyone in their bad times.
Another significant thing about the group is that it helps patients to get “second opinion” from the doctors and patients; it’s important because sometimes the parents feel that they might have done better for their child if any center in the developed country or a more popular center would have operated on their child.
It’s my pleasure to be a part of this group and I wish them for helping more and more patients over the years.”
Regards

Soy testigo deñ grandioso esfuerzo que ha hecho Steve de conjugar una enorme información para la orientación de la comunidad mundial de familias y de niños nacidos con AE y FTE .

No existe otro espacio en el Mundo que llene tanto vacío existente alrededor de este gran problema , convirtiéndose en el sitio por excelencia para renacer la esperanza de madres y familias desesperadas , convirtiéndose en esa tabla de salvación para conocer , orientarse y tomar las mejores decisiones .

Gracias Steve y Sue por este gran aporte a esta necesitada comunidad.

Dr Cristobal Abello MD Pediatric Surgeon Master in Pediatric and neonatal MIS and Terapeutic Endoscopy Profesor of Pediatric and Surgery North University and Metropolitan University of Barranquilla Colombia. Scientific and team director of the CMIpediatric International Clinic of Barranquilla Colombia

Translated via Google Translate tool.

I am witness to the great effort that Steve has made to conjugate a huge amount of information for the guidance of the world community of families and children born with AE and FTE.

There is no other space in the world that fills so much emptiness around this great problem, becoming the place par excellence to be reborn the hope of desperate mothers and families, becoming that table of salvation to know, guide and make the best decisions.

Thank’s Steve and Sue for this great contribution to this needy community.

Dr. Cristobal Abello MD
Pediatric Surgeon
Master in Pediatric and neonatal MIS and Terapeutic Endoscopy
Professor of Pediatric and Surgery North
University and Metropolitan University of Barranquilla Colombia.
Scientific and team director of the CMIpediatric International Clinic of Barranquilla Colombia