Changemaker Profile

June

I was the infant who brought tears to my parents’ faces when the midwives and nurses broke the news “June has been diagnosed with sickle cell anaemia; I am sorry.” I became the result of sleepless nights, countless trips to hospital, missed school days, midnight ambulance call outs, an expensive cost to the health care system, a social inconvenience stemming from the unpredictability of my disease.

But I allow myself to be helped, loved and saved. My loved ones are an essential part of me getting through this disease and in having a stable mental health. I get support from counselling, journaling, art, writing and travelling.

Your red blood cells are round and mine are shaped like sickles. My name is June and I was diagnosed with sickle cell, a genetic blood disorder that affects the red blood cells. I am one of the 17.

A Captive of Crisis

1 in 17 people will be affected by a rare disease at some point in their life. It’s a fairly daunting statistic. It could be one of your kin at a family get together, a friend in your class you went to school with, or a stranger you shared the bus with. Rare is not as uncommon as we believe and without raising awareness of these rare diseases, how can we help ourselves or the loved ones it could affect in the future.

Artist Profile

Rachel Sawyer

Rachel is a Freelance Illustrator producing digital artworks on Photoshop and Illustrator. Her style leans towards realism, with a focus on texture and light. She enjoys illustrating works that combine social topics including environmental activism and diversity, with elements of the surreal.

A Captive of Crisis

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 #IAmNumber17.

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