In this issue, we jumped at the opportunity to have a chat with Caz Boyd who has adopted many roles within the cystic fibrosis (CF) community.
Caz is a post-transplant adult living with CF. She wears many hats; CFWA President, member of the Adult Advocacy Group, contributor to the CF Talk Facebook page, professional in the health industry, ray of sunshine in the lives of many, and so much more.
You are one of the stars of the CF Talk videos for young people. What do you hope will be the impact of these films?
I really hope these videos will have a positive impact on the community, but I hope they will especially impact young people with CF. I hope young people with CF see the variety of age groups – Mitch and I are the older end and the others are on the younger end – and they realise we all have gone through the same type of things. If they are sitting at home or watching these videos online, they know that they are not the only ones out there experiencing whatever they are going through.
What do you think you specifically brought from your experiences that will help people who watch the CF Talk videos?
Motivation. For me, something that was important to get across was that career-wise – what I am doing now – wasn’t what I initially wanted to do. I wanted to be a policewoman, or a hairdresser, but I was told that someone with CF couldn’t chase a criminal or that the chemicals would be detrimental to my lungs. But I am now in a job that I love. If you get knocked back once and then knocked back twice, just keep at it. Keep going.
What was it like for you, reflecting on being a young person?
It brought up a lot of emotions, actually. It was good because I am very much an open book and if I can help someone, I am more than happy to tell them my life story. I don’t hide a thing. It provided a lot of insights for me. CF now is nothing like it was in the 70s and 80s.
In the films, you discuss your achievement of becoming CFWA President. What inspired you to take on a role like this?
Simply being on the board initially was a great achievement for me. I believe having someone on the board with CF gives a different perspective. Currently we have a mix of people who don’t have a connection with CF; we have parents who have children with CF; and then there is me. The board, as a whole, has a great dynamic. Being voted Vice President I thought, “this is great”. Being nominated and then voted in as President was like winning an Academy Award to me. I was so honoured. If I can make a difference to one person with CF, I am happy with what I have done. If I can inspire or empower 100 people with CF, then that’s a great achievement to me.
What do you wish to achieve in this role?
I wouldn’t go as far to say “Lives Unaffected by CF” which is part of our [Cystic Fibrosis WA’s] strategic plan as I think we are still a long way off from that. I would like to help with the little things. One of my focuses is to recognise the adult population with CF and all the new challenges that come with the aging CF population.
You are in the Adult Advocacy Group. What are the objectives of the group and how do you see your role?
Advocating for adults. We are going through menopause; we are going through andropause; we are breaking bones; we are aging in new ways. We are getting older and there are things like financial assistance, such as having a financial advisor speak to the community, that could be beneficial. I took out my superannuation when I went to Sydney for my transplant. A lot of people with CF who are my age have very little super because we didn’t think we would need it. That’s something we can advocate for.
We have talked about your involvement in various roles. You are also a significant contributor to the CF Talk Facebook page. You give lots of advice and share your story to other adults with CF. What would be your advice for others who want to be involved, like you, in CF-related activities?
We do have some unique challenges because of cross-infection but try and get on the board! Get involved on Facebook, volunteer, ring up CFWA and see what you can do, make yourself available and known for campaigns. CF Talk on Facebook is a great forum; we are all very open. This morning I posted about forgetting to take Creon® and how I am suffering today and people understand that. Get active on social media; it’s a great place where we are all involved.
To join our CT Talk closed Facebook group, open to all adults with CF, visit www.facebook.com/groups/cftalkadults
Article from RED Magazine, Edition 1, 2019.