Ulcerative Colitis Advisory Board

UC Patient Advisory Board

Sep 23rd – 25th , 2016 I had the honor of being a part of the Ulcerative Colitis Patient Advisory Board for a major pharmaceutical company.

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I was actually recommended by a close friend and fellow blogger, Amber (Didn’t know if she wanted her last name out there or not)! Just thought I’d give a little background before I proceed. Amber and I met years ago when I was blogger for Living with Colitis Daily, a blog I created to follow my journey with my chronic illness, while reaching out to others and lending an ear when I could. Amber saw a video I had made and reached out to me on some form of social media and I must say I’m SO GLAD she did. Amber really helped me through rough times in my illness and played a major part in my decision to have surgery. Although we’ve kept in touch for years, we’d never met face-to-face until this weekend! – (Amber pictured on the right)Anyways, so she texted me about a month ago asking me if I’d be interested in taking part in an Advisory Board for UC patients. And knowing me, you know I said YES! I was more than elated.blog12blog11

We discussed more about living with our illness, answering questions and also learning more about the company and their mission. Amazing. I have never seen a company so eager to get involved with patients as this one. They wanted an up-close and personal look at the life of an IBD-er and boy did they get one. It wasn’t long before the 20 of us were talking and laughing amongst each other, as if we’d known each other already. The company’s overall mission is to help UC patients in whatever way they can. Be it the pharmaceutical aspect or even just issues we have in everyday life. The dinner lasted a little over 3 hours. I was exhausted. After a long day I was ready to hit the sheets to prepare for an early morning! Saturday Sep 24th – On Saturday we had a long day ahead. I woke up around 6:55 and started to get dressed (I knew if I went back to bed I wouldn’t be able to wake up again for hours). blog13

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My Thoughts
I personally loved this experience. I was amazed by how many people sat in the room with such similar journeys to mine! I was so proud of what everyone had accomplished with such a life consuming illness and I honestly can’t wait to see these people again (in about a week lol)! I learned so much in that weekend about medications I had taken, treatments from the past, the pharmaceutical industry, CCFA (who also attended), and so much more!
What’s to Come
I truly feel inspired now more than ever, I am determined to help my community in any way I can. In 2014 I started my journey with “Living with Colitis Daily,” I will not be pursuing that again, but I will commit to consistently blogging and helping my fellow Spoonies. My blog will remain as I’ve mentioned before, a Lifestyle-Chronic Illness blog – A blog with a twist. I want my readers to see me as more than ill. I want you to see me for everything I have to offer. – And more.


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