Reporting on What is going on in the World. I'm a Crohn's Advocate and currently a Volunteer for the Crohn's and Colitis Foundation Of America San Diego and Desert Area Chapter.
Wednesday, April 6, 2016
Crohn’s Disease and a Mitzvah Project
Here is a story about Ryan Diamond, a 13-year-old Crohn’s patient. Today there are more than 1.6 million American adults and children living with Crohn’s disease or ulcerative colitis, two debilitating, medically incurable diseases known collectively as inflammatory bowel diseases (IBD). Did you know American Jews of European descent (Ashkenazi) are four to five times more likely to develop IBD than the general population? Ryan Diamond, a 13-year-old Crohn’s patient, is working to bring awareness to the plight facing the Jewish population being diagnosed with these diseases. Ryan is like any other teenager – he plays basketball, soccer, baseball, runs tracks, loves to ride his bike, swim, hike, ski and play piano. He loves watching sports and playing with this dog Tula. In 2014, it became clear he would have to deal with a few more things than a typical teenager. Here is his story:
Throughout 2014, I noticed I was getting a lot of stomach pains and fatigue. At first we thought it was just gas. But blood work in October showed signs of Crohn's disease. After going through a series of tests including a colonoscopy, endoscopy, MRE, pill cam, x-rays and more blood work, the diagnosis was confirmed. I was quite surprised. I never thought I would have a disease that doesn't currently have a cure. I learned by meeting with doctors in Atlanta, Boston, and Philadelphia that there were great medicines available. I was very happy to learn this because the first medicines I tried didn't help my symptoms; they made me feel worse! It was a tough year. I missed a lot of school and had a lot to catch up on. Also, I took a number of trips to the hospital when my stomach pains got really bad. In December 2014, I even had to take an emergency flight back from my vacation in Colorado to be admitted to the hospital.
Telling my friends and family that I had Crohn’s disease was a hard process for me. One week before the Take Steps Walk in 2015, I decided to email my classmates, family, and friends and tell them that I had Crohn’s disease and that I would be participating in the Take Steps Walk. I raised more than $10,000 in that one week. I couldn’t believe how many people wanted to donate, to support me and to help a cause that is very important to me. I was overwhelmed with how supportive and nice everyone was and it made me feel good that I didn’t have to keep this secret any longer.
As part of my Bar Mitzvah, I chose CCFA as my Mitzvah (Charity) Project. The summer before my Bar Mitzvah, some friends and I set up several lemonade stands. I donated the money to Camp Oasis and purchased items that the camp needed like art supplies, sports equipment and water bottles. Camp Oasis is a camp where kids with Crohn’s and Colitis can be themselves without worrying about their daily struggles with Crohn’s and/or Colitis. I love going to Camp Thunderbird in the summer, so donating to a camp that can help kids with Crohn’s and Colitis was special to me.
Since my diagnosis, people have been very supportive, caring, and helpful while I've been going through this difficult process. Teachers at school have helped me catch up on work. The doctors and nurses are very kind and helpful when it comes to questions and my needs. My coaches have been understanding and supportive. My friends and family have helped me throughout the journey encouraging me to fight through everything and checking on me. My sister has been very understanding that the diagnosis has taken some attention away from her. My parents have fought through with me and I am so lucky that I don't have to go through this alone.
On Sunday, May 1, 2016, I will be walking in my 2nd Take Steps event. Take Steps is CCFA's national walk, the nation's largest event dedicated to finding cures for Crohn's Disease. It is a 2-3 mile walk to raise money for important research, bringing us closer to a cure for Crohn's disease. Your donation will help support local patient programs, as well as important research projects. This cause is very important to me and I appreciate your help as we fight for cures! In addition to donating, COME walk with me Sunday, May, 1. There will be food, music, and family activities. The more money we raise, the closer we will be to making life more manageable for people who live with these diseases every day.
To walk with Ryan in Atlanta visit www.cctakesteps.org/atlanta2016 or to find a local walk in your area, visit www.cctakesteps.org.