Hey Sophia, please tell us a little bit about yourself- background, upbringing etc.
Born and raised in London, England, where the days are long and wet, I had a creative but hard childhood. I was in and out of hospital due to sickling crises and a majority of my schooling was managed at home, which, in the 90s was quite rare. My days were spent writing long stories on my father's typewriter, creating whimsical stories that were my distraction from the pain of Sickle Cell Disease. I then moved with my family to Australia and at the tender age of thirteen, I woke up to discover I couldn't bend my left leg out without experiencing pain. I was later diagnosed with Avascular Necrosis, a debilitating bone disorder eventuating from sickling crises and I was told I would never walk again.
Fast forward two years, one wheelchair, two pairs of rainbow coloured crutches and a rocky start to a new school, I decided to walk without aid, and pursue photographic modelling. Much to my joy, independent modelling was a form of creative escapism and I've worked on music sets as a model with international artists such as DVBBS, and 11 years later, I still enjoy it as a hobby.
Tell us about your channel The Sick Sexy and how it all started?
The Sick Sexy was born from a desire to change the narrative around feeling beautiful with invisible illness. Often times the term 'sick' or 'invisible illness' are not synonymous with 'sexy, sexual empowerment or desire,' so when my first video, "Having sex with a disability" aired in 2018 on Youtube, it gained curiosity quickly. Since then, it's had over 28,000 views.
The Sick Sexy started as an thought provoking platform to share my thoughts and advice on navigating the world as a young woman with invisible illness, from dating, to stigma to my own personal experience with disability, The Sick Sexy has since expanded to share the amazing stories of other people. I've had the great honour of interviewing acclaimed authors such as Anne Welsh, performance coach Michael Johnson and so many other amazing and talented men and women with their own stories of adversity.
What are some of the major challenges you have faced with Sickle Cell ? How were you able to overcome them?
Living with a degenerative bone disorder such as Avascular Necrosis and arthritis has definitely been challenging. Exercise, socialising, work and generally navigating life in my twenties has been difficult aside chronic pain and a physical limp and there are certainly days when I feel like giving up, however, the spark of passion inside me always challenges me to keep going.
To me, Sickle Cell Disease is not something to be 'overcome,' rather managed with a lifestyle plan, a efficient medical team and a positive spirit, all of which I am grateful to access.
The other biggest challenge with Sickle Cell is undergoing Apheresis (blood exchange transfusion) every month as part of my ongoing treatment plan to avoid the complications associated with this condition. Apheresis is a procedure which removes whole blood from the vein and replaces it with a donors. I've had over 100 exchanges in 9 years and the process is extremely painful due to excess scar tissue, but necessary and life changing. I combat this challenge by wearing my favourite dress, a pair of heels and always having my favourite music ready to go. How you look definitely impacts how you feel and I'm a huge advocate for glamour and dressing up in whatever setting.
What exciting projects are you currently working on?
I just recently published my second novel, Sabotage, which recently got chosen for the Dymocks Online store so I'm so excited and grateful for the opportunity to share my work with as many people as I can.
Sabotage can be found on amazon & Dymocks
How do you think your passion plays a role in your recovery/ management of your Sickle cell ?
I've always been a highly motivated individual and despite numerous setbacks, I believe it's my tenacity for creativity and life that helps me to manage chronic pain, stigma and the ongoing challenges of SCD. Having a purpose, whether that be in my creative writing, where I can become consumed for hours, or creating content for The Sick Sexy, or challenging myself working in healthcare to brighten someone's day, my passion for people and life have always balanced out the hard side of long term illness.
Why do you think there is such a lack of visibility/ knowledge of Sickle Cell Anaemia and what ways can people help to change this?
It always astounds me when people say (usually doctors,) "Oh Sickle Cell is so RARE!" when approximately 100 million people live with the Sickle Cell Disease trait globally. I still question why there is a lack of visibility regarding Sickle Cell, but I'm equally as proud and excited when I see advocacies and foundations spread the message like Gideons Treasure. I've had the great honor to work with advocacies such as The Australian Sickle Cell Advocacy, founded by one amazing nurse, Agnes Nsofwa, who has dedicated her life to spreading the message about Sickle Cell Disease and supporting the rights of people living with this condition.
All it takes is one person to start a movement. You are the change.
What are your future goals ?
I would love The Sick Sexy to continue expanding and one day soon evolve to include a podcast where I continue to interview amazing people all around the world about their experience with invisible illness. Currently, I am content focusing on producing weekly content for The Sick Sexy, collaborating with talented individuals and finishing my Public Health Degree with the intent to go into social work and help people.