World Psoriasis Day 2022 came with a surprise for me. My long-time nursing colleague confirmed that my itchy scalp was indeed psoriasis. The discomfort, the scales, the falling flakes, the pain, all so indicative of this condition that I’ve known about for a long time and been intimately associated with for 35 years. There are so many options for topical treatment coming from different perspectives. Like others, I wondered who to turn to and what would best help me.
As a person connected to the medical field and also curious about how health professionals respond to patients’ needs, I chose to visit 3 different pharmacists to ask advice. Not surprisingly, each offered me a different kind of shampoo and when I queried about the same one, there were different answers. As a qualified physiotherapist, I first learnt about psoriasis during my training, I still felt confused. Who do I follow and why do I choose that avenue? Maybe the answer is to follow a friend who relies on a boiling water drink with turmeric and cayenne pepper then I can just stay away from the pharmaceutical industry.
Looking back, at the age of 7 years old, my eldest son was diagnosed with psoriasis. We were fortunate that we did not have to travel from pillar to post to understand exactly what was going on with his skin as we had incredible care and expert support from the nursing team in the Dermatology ward at our local public hospital. Before school each day I would take him for his lights and Dithronal treatment. He learnt to understand his condition and manage it. Through the years he has had the expected flares and remissions, been on numerous different treatments and now has the benefit of biologics in the United States where he lives and works. My second son developed psoriasis in his mid-twenties. I’m proud that he copes with it and is willing to expose his skin to others, hopefully through that visibility helping to foster education about the disease.
My involvement with the South African Psoriasis Association (SAPSA) has been off and on though in the last 10 years my interest and position to support others has increased. Since the disruptions of COVID-19, our face-to-face meetings with presentations by experts have been replaced by Zoom meetings and webinars, and more importantly by a SAPSA WhatsApp group which enables members to hear from each other, share their concerns and engage with the many difficulties of living with psoriatic disease, especially in a country where there are so many limitations related to access to medicines. What is clear is that support is crucial and each individual’s journey is unique.
So much about psoriatic disease has been hidden and silenced. I’ve found that the more I mention it to others, the more it seems to be revealed. Since my conversations often reflect aspects about my involvement with SAPSA I have heard that both my brother and my brother-in-law also have psoriasis. There is such a strong genetic component that is so often unrecognized largely because people try to conceal their struggles.
Currently I’m working on getting our SAPSA website and social media up and running as it can promote education and awareness and debunk myths around psoriatic disease. My hope is that we can also illuminate different African perspectives. For instance, recently I was hearing about how cultural beliefs add to the confusion regarding fertility issues for women with psoriasis. All stories need to be told to highlight how we can help and support each other.
