MARCH 10, 2022
I grew up in Iran in a warm and friendly home with my parents, sister, and twin brother. Both my brother and I were diagnosed with cystic fibrosis (CF) at the age of four. Growing up with CF was challenging, people didn’t understand or know about the disease, they would notice my constant coughing and lack of weight gain. It was hard, I didn’t talk about my CF with others, but when I got older, I took a psychology course and it helped me to understand, this is me, Arash, and CF is a part of my story. I studied IT programming in college and began working as a purchase manager at an IT company, I also began to talk about my cystic fibrosis more with others, in hopes that it would help them feel comfortable to be their true self.
My sister moved to Canada nearly 20 years ago, and my brother immigrated six years ago. It was hard to be apart from my brother as we share a very strong emotional connection. We planned to meet each other at least once a year, until five years ago, when CF derailed our plans. My brother got very ill and could not travel. He was hospitalized due to increasing sputum production and shortness of breath and was eventually listed for a double transplant. Unfortunately, having your health (or someone else’s health) impact your plans is something that you get used to when you live with cystic fibrosis.
I decided to visit my brother in Canada in June 2017. It was amazing to see my family but also the Canadian community. The visit proved to be a very positive experience as my brother’s health improved. He was happier, more energetic, and much more optimistic, which helped him feel stronger and recover from his lung disease. Fortunately, thanks to the CF health care team my brother was no longer required to undergo transplant surgery and was removed from the transplant list.
It was hard to be away from my brother and the separation took a serious toll on both of us. After my trip to Canada, I resigned from my job at the IT company and decided to go back to visit my family in Canada. I returned in June 2018 to fulfill the emotional needs of my twin brother and myself. I have since applied to extend my stay and have had the opportunity to volunteer for Cystic Fibrosis Canada. Over the past two years, I have increased my contributions to the Toronto Chapter.
I have always had very strong interest in connecting with others who have CF to learn and listen to their experiences. So, when I received the email about the information and support focus group opportunity through Elevate, I did not hesitate to respond. I really enjoyed participating in the focus group! I found it to be an extremely warm experience and was touched by everyone’s journey. I feel deeply that my contributions were well received by Cystic Fibrosis Canada and my peers in the meeting.
Having such a safe space for a focus group can have a significant effect on people’s willingness to share their personal experiences. Everyone could relate and felt comfortable to exchange their experiences and to give more hope which was a key highlight for me. I do a lot of volunteer work with the Toronto Chapter, participating in the focus group was a new way for me to expand my contributions as a volunteer.
I would be interested in similar opportunities in the future, and I would highly recommend it to my CF friends out there.