Choosing My University and Course
I chose my university based on a strong desire to return to the coast. My family is from East London and the north coast of Durban, and I wanted to be closer to my roots. More than that, I had grown tired of the big city life and the immense amount of effort required to manage my health while living in the Highveld. The coastal (salty) air, humidity, and active lifestyle have significantly reduced the need for extensive preventative treatments compared to what I faced in Johannesburg.
Surprisingly, the availability of medical facilities did not play a huge role in my decision to move to Port Elizabeth for university. In hindsight, I should have given this more thought, as I have struggled to find a GP with a deep understanding of Cystic Fibrosis (CF). As a result, I’ve maintained telephonic consultations with my previous GP, Dr. L.T. Cazes, in Johannesburg, whose expertise and eagerness to stay informed about CF have been invaluable. However, I must acknowledge Dr. A. Panday in Port Elizabeth, who, despite not being my long-term physician, has shown great professionalism and a willingness to research CF to provide better care.
For specialist care, I continue to see Dr. C. Baird at Milpark Hospital in Johannesburg. We use a hybrid consultation system, with in-person visits every six months for lung function tests and physical exams, complemented by online consultations to discuss any concerns and medication adjustments.
While Johannesburg offers a higher standard of chronic care facilities, I have found ways to adapt and continue receiving the necessary medical attention.
Challenges of Managing CF at University
The biggest challenge I faced in university was managing CF as a newly independent 19-year-old eager to experience freedom.
My first year, which was mostly online due to COVID-19, forced me into an isolated lifestyle despite being naturally extroverted. Loneliness was a significant hurdle, but it allowed me to focus on academics and my CF treatment protocol. By the end of the year, as restrictions lifted, I began forming friendships and adjusting to campus life.
My second year, however, was a different story. I call it my “throwaway year” because I partied too often and neglected my CF management—poor diet, lack of exercise, inconsistent nebulizing, and an erratic sleep schedule. This led to my colonization with Staphylococcus aureus, forcing me to acknowledge that neglecting my health was not sustainable.
By my third year, I had established a healthier balance. I structured my weekdays like a 9-to-5 job, dedicating focused time to academics and CF care while leaving evenings for exercise, cooking, and relaxing before bed. My weekends remained social, but with better boundaries. This routine allowed me to maintain my health while enjoying university life.
To anyone in a similar situation: Be patient with yourself. Learning how to balance independence, health, and social life is a process, and trial and error is part of the journey. You’ll find your rhythm in time.
The Support Systems That Helped Me
A reliable support system is crucial. Having a good pulmonologist, a knowledgeable GP, and a physiotherapist for exacerbations makes a significant difference. Additionally, acupuncture and homoeopathy have helped with minor illnesses, though they are not substitutes for proper medical treatment in cases of serious infections like Pseudomonas aeruginosa or Staphylococcus aureus.
Psychological support has also been valuable. Managing CF and staying on top of treatment can be overwhelming, so talking to a therapist occasionally has helped ease the burden.
Lastly, a solid group of friends has been essential. It’s not about having many friends but rather a few close ones who truly understand and support you. A strong support network makes all the difference.
Balancing Academics and CF Management
I maintain a strict routine: nebulizing twice daily—once in the morning before starting my day and again in the evening while winding down. I also take all my supplements after dinner. To make this routine more enjoyable, I read or listen to music while nebulizing.
For anyone with CF entering university, my advice is to find a GP who either has experience with CF or is willing to learn. Having a doctor who understands your condition is essential for navigating health challenges while managing academics.
Personal Growth Through CF
Living with CF has shaped my character. It has taught me resilience, determination, and the ability to persevere through challenges. I refuse to let CF define me—it’s simply one aspect of my life that requires extra effort.
To younger CF patients: It may seem daunting now, but you are not alone. There is a whole community of people who understand what you’re going through. Your life is not limited; you just have to adapt your approach to challenges. With the right mindset and support, you can accomplish anything.
My Biggest Takeaway from University
University has given me the confidence to take charge of my health and my future. The most rewarding part of this journey has been proving to myself that I can live independently, succeed academically, and maintain my health.
For anyone with CF considering university: It is possible. It’s not always easy, but it’s worth it. And you are more capable than you think.
Thank you to Dayna de Charmoy for sharing her journey. Dayna is 21 years old. She was diagnosed with Cystic Fibrosis at 5 weeks old.
Dayna is studying BSc Environmental Sciences at Nelson Mandela University.
Questions compiled by Kimberley Keyzer
*Please note this is an edited and adapted version of questions answered by Dayna de Charmoy.
Medical Disclaimer: This is not medical advice. The information shared is based on personal experience and should not replace professional medical guidance. All individuals with Cystic Fibrosis should consult their healthcare team for personalised advice and treatment.