Chantelle’s Story

My name is Chantelle van Wyk and I have cystic fibrosis. 

Cystic Fibrosis is a rare genetic disorder. It is a life long, life threatening disease. The impact it has on my family, friends and my own life is immense.

The symptoms are recurring lung infections that result in frequent hospitalizations, the recurring lung infections damage the lungs which is irreversible, as a result my lung functions decline as time passes. This affects my abilities such as keeping up physically with tasks, work, social and even my mental well being is affected as I am always tired and of course, battling with the idea of having a shortened life ahead of me, and the uncertainty of the future.

You are always canceling plans due to unexpected hospital admissions or being too ill. I have been in and out of hospitals, I had to stop working, I struggled concentrating, sleeping and studying was very difficult. Daily routines are extremely time consuming: nebulizing at least twice a day, which could be up to a 1hr per nebulizing cycle, physio at least twice a day, plenty of tablets and repetitive breathing cycles.

I have a 7yr old son. It was extremely hard coping with being “less” of a mom than what I would like to have been for him.

My weight was also declining, I had always been slender due to the symptom of malnutrition due to the fact that it affects my body’s ability to absorb the nutrients (not enough enzymes), I only grew skinnier over time.

My body was fragile, which made it harder for my body to cope with the recurring infections. It was a vicious cycle. I also did not have any veins that were strong enough to use for the required minimum 2 weeks IVs in hospital every 3 months, if I could cope for that long, so a port was inserted.

I ended up with pseudomonas in my blood – not just in my lungs, which has been my life long bug, ever present, as a result my port became compromised and had to be surgically removed with urgency. I was very ill, it took some time to recover from the blood infection..

At that stage I was in hospital for weeks, out of hospital for one week, then back again for weeks. This went on for months.

Then I was fortunate to have the kindness of family and friends bestowed upon me.

With their financial aid, I was able to get Trixacar! This was truly an impactful and a miracle that happened as this changed my entire life! 360 Degrees!

Since I have started on Trixacar, I was able to start working again, I’ve started studying, I partake in exercises with ease, I cycle to work and back everyday, I have gone mounting bike cycling, I have done the warrior race, I have gotten much stronger physically, going to gym, I am not tired as I used to be, my body looks and feels amazing, hiking, the list is really endless as I have only gone from strength to strength.

Little things like not coughing at weddings, when you are trying to sleep, really anywhere as before, all you do is cough and not discreetly either.

I am the mother I wish I was since my son was born.

Strong, able and fit. Keeping up with him is such a beautiful gift. It’s truly life changing and I feel like my world has opened up to me and the possibilities are endless.

I have never felt so hopeful in my life. My very unexpected long life.

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