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Changemaker Profile

Blessing

I was diagnosed with sickle cell at the age of 3. Growing up, I was constantly in and out of hospital, whether it be for an admission or appointment. Each visit required an in-depth explanation of my condition, crisis and treatment. The repetition began to get frustrating – no matter the hospital or urgency of the crisis, the explanation was always the same.

Years later, I was diagnosed with Gamma-delta hepatosplenic lymphoma, a type of blood cancer. My specialist nurse talked me through everything from financial care, social care, mental health care, information sessions, treatment and contact details if I needed further assistance. I had never felt so connected – physically and emotionally – to anyone in the healthcare industry until that moment.

My cancer journey introduced me to a wellbeing standard I was unaware is possible during my sickle cell journey. A whole village came together for my lymphoma journey, and I wish this same village was present in my sickle cell days. My sickle cell affected me for much longer and had a long-lasting effect. Believing you have a true support system with a thought-out care coordination plan can positively impact many lives.

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.
#IAmNumber17

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