Patient Voice

Patient Voice was made possible by a grant from the Arnold P. Gold Foundation, created in collaboration with the Children’s Brain Tumor Foundation. We worked with an amazing group of young people who created images which they narrated for a video to describe their own experiences – My Diagnosis, The World of Medicine (the good and the bad) and What Keeps Me Going.

Most recently, with grants from both the Fred J. Epstein Foundation and the Arnold P. Gold Foundation, we are continuing our “Patient Voice” work, engaging people in sharing their experiences to educate those working in the world of medicine.

Jordyn’s story

At the age of 12, Jordyn Shapiro was diagnosed with Crohn’s disease. Her symptoms were chronic abdominal pain, diarrhea, bloating, gas attacks, vomiting, fevers, skin rashes, anemia and indolent sores in her mouth. She had lost 30 pounds in 6 months and had stopped growing resulting in a 2-year growth delay as well as a failure of normal teeth development.

At the beginning of treatment, she was prescribed steroids and chemotherapy medication that she willingly took for one year, despite the fact that she showed no improvement at all. Her condition worsened, and, to make matters worse, her hair began to fall out. She had missed 60 days of school and was now becoming reclusive.

Jordyn had been admitted to the hospital several times for dehydration and after her last hospitalization she was recommended to a clinical nutritionist, Dr. Melvyn Grovit. Dr. Grovit was keenly aware of Jordyn’s plight, as he himself had experienced the ravages of Crohn’s disease as a child. Dr. Grovit had developed a nutrition protocol over the past 30 years and introduced it to Jordyn. Dr. Grovit then teamed up with Dr. Alfred Slonim, Jordyn’s endocrinologist, who had also been working with Crohn’s disease patients from a growth [...] continue the story

Jordyn’s Art Gallery

Jordyn is a junior at NYIT University majoring in Art & Computer Graphics. She is a 2007 recipient of the UCB Crohn’s $10,000 scholarship for her academic achievements and perseverance through her disease.

 

The Foundation for Nutrition and Inflammatory Bowel Diseases in Children, Inc. (IBD) was formed to raise awareness and foster further research in nutrition and growth factor interventions currently available to patients with IBD.

If you would like further information regarding this research please contact the NIBD.

More NIBD Stories

Ignored at a Support Group for Saying a Word!? (Nutrition)!

In the year following my daughter’s diagnosis of Crohns disease also called Inflammatory Bowel Disease (IBD), we had a surprising experience! As a mother of a child with a chronic illness the first thing I did was try to educate myself as much as possible. Twelve years ago, when my child was diagnosed with this debilitating illness, I searched the internet to learn all I could about IBD. The next thing I did was join IBD organizations to learn and show my support to find a cure!

My daughter, Jordyn was 12 years old at the time she was diagnosed. Her symptoms were chronic abdominal pain, diarrhea, bloating, gas attacks, vomiting, fevers, skin rashes, anemia, joint pain, and indolent sores in her mouth. She had lost 30 pounds in 6 months and had stopped growing resulting in a 2-year growth delay as well as a failure of normal teeth development.

At the beginning of treatment, she was prescribed steroids and chemotherapy medication that she willingly took for one year, despite the fact that she showed no improvement at all. Her condition worsened, and, to make matters worse, her hair began to fall out. She had missed 60 days of school and was [...] continue the story

Stronger | Seattle Childrens Hospital

This patient produced video is swiftly becoming viral and is on track to hit 1 million views in its first week. The hemoncology floor of Seattle Children’s Hospital performs Kelly Clarkson’s song “Stronger”.

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Patient Commando creates social impact by providing platforms that amplify the patient voice.

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