We are so honoured to shine the spotlight on and interview the gorgeous Sophia Anna, Sickle Cell Warrior, Founder of The Sick Sexy, Writer and Author of Sabotage. From being told she would never walk again to modelling on music sets with DVBBS Sophia has shown that she is LIMITLESS
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.
Growing up in England with cold weather taught me to be aware of differing weather changes and nowadays, I am more conscious of staying warm in winter, although Australian winters are nothing like English ones! Having a long term invisible illness like Sickle cell also impacts positively on my ability to advocate for myself in medical settings and vocalise my concerns when I feel my autonomy is being compromised. I am often asked if I'm a nurse to which I reply, "No, I've just lived with this condition since birth!"
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.
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.
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.
I cannot preach enough, 'Speak up.' Normalise your pain, share your truth. The world is full of entrepreneurs and powerful people who have spoken out about their hardship and there is so much need
for young women with Sickle Cell to be vocal about their experiences. We are living in such an amazing era where a spotlight is being shone on mental health and chronic pain yet I felt so alone until I created The Sick Sexy. Since then, I've become apart of so many amazing online communities with individuals going through invisible illness and it's such as gratifying experience to connect with other people who are passionate about health.
People with Sickle Cell Disease are often told they are limited, physically, emotionally, mentally, from pursuing their purpose in life. It may have been a doctor, a teacher, even a parent, but I promise you, your biggest strength is LIMITLESS and that's your voice.
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.
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.
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.
Subscribe to Sophia Anna Youtube channel "The Sick Sexy" where she interviews Gideon's Treasure Founder Barbara about managing Sickle Cell anaemia with a successful career