From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. In honor of May being Cystic Fibrosis (CF) Awareness Month, we are shining a light on people directly affected by CF in our #CFStrong series. Today’s guest post comes from Jarrod Landau, a 45 year old with CF living on the gold coast of Australia with his wife and children.
When I was diagnosed in 1974 with Cystic Fibrosis (CF) in Australia, my parents knew nothing of the disease and received the fright of their lives. They were filled with uncertainty and fear. Initially they took me to the doctor at 2 months because I could not put on weight. They would have never expected to come out with a son that had a degenerative chronic illness.
After the initial diagnosis appointment, they received one month’s medication, a phone number to call for emergencies, and a little yellow 20 page illustrated book on “all you need to know about Cystic Fibrosis,” and they were promptly sent home. Though they did not have access to the information and different support groups that we have today, my parents chose from that point forward to approach my diagnosis with determination and discipline. The fact that they were so dedicated is something that I am forever grateful for, and the reason why I believe I am still here today at age 45.
“Parenting is difficult at the best of times. Add the challenges of doing three hours of medical treatment to your child, motivating and guiding them to put his or her health first each and every day, and the task becomes nothing short of monumental.”
I was no angel. I know I made their life difficult, yet my parents were persistent in prioritizing my medication routine. I went through the usual adolescent stages of going out and having a great time, but my father’s voice was consistently at the back of my mind. “The only thing you have control over is to ensure that you are in the best shape possible, so that when the cure comes, you are able to benefit from it.” This motto drove my life when I became independent.
At 27 years old, I was fortunate enough to have my own child and only then did I really appreciate what my parents did for me. My parents’ care created the crucial building blocks for how I still manage the disease today. My treatment was always non-negotiable and I have carried that same discipline and commitment with me that my parents first instilled in me in my childhood. To this day, I have never missed a treatment in my entire life.
I have two nonsense mutations (W1282X and G542X). I first learnt about nonsense mutations about 14 years ago. I was told that one of my mutations is most common in Ashkenazi Jews, so I was recommended to contact Professor Kerem at Hadassah Hospital to see how they treat patients with this mutation. Little did I know that this would lead to me moving with my wife and kids from Australia to live in Barcelona, Spain for 7 years to take part in a trial. The Ataluren (PTC124) trial had so much hope for those with nonsense mutations in the community, but unfortunately it failed just short of the finish line.
I first interacted with Emily through social media. I am amazed at what Emily’s Entourage (EE) has been able to achieve and the people that they have been able to get on board as their scientific advisors to drive their mission forward.
While I have well established routines for medication and exercise and continue to do everything I can to help manage my disease, I know that the key for my future is new breakthroughs. Over the last couple of years, I have been privileged to be able to help fundraise for EE in their efforts to find new advancements for nonsense mutations of CF. They have raised millions for research and are driven to find new treatments within the next 5 years. We are already seeing many research projects that were funded by EE come to life. This is truly inspiring and I sincerely believe gives me the best hope for finding a major breakthrough in my lifetime.