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Crohn’s Colitis – A Parent’s Perspective

YouTube Description: Amazing interview with Frank Garufi Jr. as he shares with us his experience and challenges dealing with his son’s Crohn’s Colitis Disease. Please feel free to share and leave your comments below about your experience with this disease and any tips and techniques that could help Frank and his son would be greatly appreciated.

A little back story on how this interview came to be…I originally met Shefali Burns on Google+ in the fall of 2011. We both participated in Hangouts ( video chats ) and quickly became friends. I would often talk to Shefali about Domenic and his condition.

During that time, Domenic was having the worst flare of his life. Between the summer of 2011 and just after Thanksgiving of 2011, we had already spent approximately 50 days in the hospital. It seemed like every treatment we threw at Domenic had little or no affect. My frustration level was as high as it could be and as Christmas was approaching, all I could think about was keeping Domenic out of the hospital for Christmas. I didn’t want Santa to have to visit Domenic in the hospital.

On December 23, 2011, Domenic had a fever of 106.5 degrees. I immediately rushed him to Children’s Hospital of Philadelphia and he was promptly admitted. I knew right then that my fears were being confirmed. We would be spending Christmas in the hospital.

The next night, Christmas Eve, it was around 11:00pm at night and Domenic was fast asleep. I was depressed and couldn’t sleep so I decided to go on Google+ and see who might be doing a Hangout. Shefali and Robert Redl quickly joined me. Both of them were absolutely amazing at keeping me company plus helping to ease my depression and anxiety! Shefali asked me if I was willing to do a public interview with her, after we left the hospital, to talk about Crohn’s Colitis and to raise some awareness for what had been happening. I agreed to do the interview but I honestly didn’t think I could go through with it.

At this point, I had never talked about Crohn’s Colitis, or IBD publicly. I rarely talked about Domenic’s condition to anyone outside of family and I wasn’t sure I could. I was even prepared to tell Shefali, just before the interview that I had decided not to do it… but at the last minute I just decided to go for it!

Within minutes after doing the interview I immediately started receiving e-mails and messages from people thanking me for talking about this. Either they also had a form of IBD or knew someone that did. I even received messages from people who had never heard of IBD and wanted to know more about it. For the first time since Domenic was diagnosed with Crohn’s Colitis, I felt empowered. I felt like the disease no longer owned Domenic and myself and we now had a new tool to fight back against it.

It wasn’t long after this that my advocacy for Domenic and the millions of people like him was born…..

If you would like to comment or give feedback on this interview please do so on YouTube

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