Could you tell us about your experience with eczema?
I can’t remember all the details very well, since I was only a couple of weeks old. However, this entire journey with my skin condition has been as much of a struggle for my parents as for myself. From only a few weeks of age, I basically had it from head to toe, with some areas being worse than others. Basically, there wasn’t anywhere where I was immune from it. Normal activities such as going for a swim or taking a bath were a struggle, as they agitated my skin immensely. Things like wet dressings, cortisone cream and moisturisers were a normal part of life from a very young age.
As I grew up things got a lot better, and my eczema was very manageable as a teenager. But then, in my early twenties, it flared up again to the point where I had to take serious medication, including steroids and immunosuppressive drugs usually reserved for people with liver transplants!
While these medications certainly helped me manage my eczema to a great extent, they came with their own negative side effects, so were very much the lesser of two evils for a long time.
How did you come to be involved in a clinical trial at the Skin Health Institute?
I was aware that the Dupixent medication had been available overseas and that it would be on the way to Australia and soon also be an option for us. So, I held my breath that It wouldn’t be too far away. A bit over a year ago I saw an ad on Facebook from the Skin Health Institute stating that they were looking for potential candidates that would fit the purpose of the trial. I rang the number, spoke to the study investigator Charlie, and he quickly realised that I was the perfect candidate.
Had you heard about the Institute before being a trial participant?
Not specifically. The only reason I saw the trials ad was because I followed an eczema support group on Facebook that had shared the Institute’s post. And the reason I followed them was – and still is – because they were the ones that did a lot of campaigning to get Dupixent to Australia and on the PBS.
What was your experience at the Skin Health Institute like?
Just phenomenal. In my initial phone consultation with Charlie, he said I would tick all the boxes. However, one of the hurdles was that I would need to wean off all the medication I was on for at least a month before I could start with the trial. Although they were ideally after someone who could start the treatment immediately, Charlie was kind enough to hold a spot for me so I could still participate. The weaning process was a trip to hell and back for about a month but it was worth it in the long run. When onsite, Charlie and Charlotte were great: they were very thorough in explaining the process and organising everything I needed. Everything was just smooth and easy from there on. And the results were just what I hoped for and more – so it was a phenomenal experience.
How did the Skin Health Institute help you manage your skin condition?
Obviously allowing me the privilege of being included in the trial was the big one. Other than that, their great knowledge and overall ability of walking me through the entire process in great detail really contributed to my comfort. Being in this position where one has to enter a trial, you like as much information as possible. Both Charlie and Charlotte were honest and upfront with everything. They helped me temper my expectations as there was no guarantee the treatment would be a success (as much as I was praying it would). They continued contact with me throughout the course of the treatment to make sure I had everything I needed, and they were also amazingly receptive to any concerns or issues I raised at any time.
What aspects of your life been positively affected by the treatment of your skin condition?
Discontinuing the previous medication has been the most obvious and immediate positive affect. I very quickly lost a lot of weight that I had gained from being on the steroids, and noticed a rapid reduction in other side effects such as the increased appetite, mood swings, trouble sleeping, night sweats etc. This has led to a massive increase in my overall confidence and general wellbeing.
Furthermore, the ability of playing sports again – considering that I hadn’t played for a couple of years – is another milestone I ticked off. Sport is now an option again and I can hopefully continue it for many years to come. So, all in all, the treatment has definitely been a life-changing experience for me, and in many ways makes me feel like a brand-new person!
Are you struggling wiith eczema? You may be eligible for one of our currently recruiting eczema trials.