Breaking Down Prejudice on International Women’s Day: 8 Photographs of Me


International Women’s Day is celebrated on March 8. This year’s theme is Break the Bias and what better time to launch Days of Rare which highlights the strength and positivity of those affected by rare diseases.

As a photographer who regularly works with people with rare diseases and disabilities, it is always a privilege that they trust me to photograph them and share their experiences. Everyone has their own battle with health and yet they seek the good every day.

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Hannah – Changing the beauty narrative

Hannah has Hay-Wells syndrome, an extremely rare condition that is part of the larger group of disorders known as ectodermal dysplasia. For Hannah, the biggest impact of her condition was the bullying she faced throughout her life because of her appearance. Hannah remembers being stared at from a young age when she noticed other children staring at her on the street. Hannah once remembers that when a little boy asked her about her skin, she answered him, but when he asked her why she wore sunglasses when the weather was bad, her parents told her. said to stop being rude. Hannah explains that she would rather be asked because by sharing her story she can raise awareness, and people can learn and understand.

Hannah – Fragile Beauty

Hannah recently fulfilled her ambition of becoming a model and also recently graced the cover of a new magazine called Rarity Life created by Same but Different.

Michelle C – Never Knowing Where Her Illness Will Target

Having a disease that can affect any part of your body is the reality of living with Behcet’s disease and one that Michelle C knows all too well. She was very active, fit and worked full time, but apparently became chronically ill almost overnight. She told us “I came down very quickly, but apparently I had already had symptoms. I always suffered from ulcers, I talk about thirty ulcers at a time, but after having my son, my joints started to swell and I had headaches. I couldn’t walk. I was in a lot of pain and it just seemed to come on overnight.

Michelle C – Take each day as it comes

Life with Behcet’s disease is unpredictable, debilitating, and the diagnosis changed my life. Despite the condition, she tries to accomplish as much as she can every day.

Michele – Why not me?

The first year, I think every emotion goes through your head. ‘Why me?’ definitely come a few times, but now I look around and think everyone is dealing with something. I think we all have our different crosses to bear. So I don’t really think that way anymore.

Michelle – Inner Strength

Michelle often struggles with muscle weakness due to a chronic autoimmune disease called myasthenia gravis. “I remember trying to feed my daughter and I couldn’t lift the spoon from the bowl to feed her.

Angela – Freeing yourself from your condition

Angela has Charcot-Marie-Tooth disease (CMT), a group of inherited conditions that damage peripheral nerves.
I was working full time as a mental health nurse. I exercised three or four times a week and had a good social life. So my life was full. It didn’t really change much at first because I refused to let it happen once I got my diagnosis. But now there are a lot of things I can’t do. I can’t walk around, simple things like doing any form of exercise leaves me feeling absolutely tired and in terrible pain.

Angela – Changing perceptions of life

Charcot Marie Tooth is progressive and degenerative but not life threatening. But it changes your perception of life. You have to learn to live with chronic pain. You have to learn to live with mobility problems.


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