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

As a photographer who works regularly with those affected by rare diseases and disabilities, it is always a privilege that they trust me to photograph them and share their experiences. Each has their own battle with health and yet they look for the good in each day.

More info: samebutdifferentcic.org.uk

Hannah – Changing the narrative of beauty

Hannah has Hay-Wells syndrome, an extremely rare disorder that comes under the broader group of disorders known as Ectodermal dysplasia. For Hannah, the biggest impact of her condition has been the bullying she has experienced throughout her life as a result of the way she looks. Hannah recalls being stared at from an early age when she noticed that other kids would stare at her in the street. Hannah remembers once that when a little boy asked about her skin she answered him, but when he went on to ask her why she was wearing sunglasses when it wasn’t sunny his parents told him to stop being rude. Hannah explains she would rather be asked, because in sharing her story she can raise awareness, and people can learn and understand.

Hannah – Fragile Beauty

Hannah has recently realised her ambition to become a model and also recently featured on the cover of a new magazine called Rarity Life created by Same but Different.

Michelle C – Never knowing where her disease will target

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

Michelle C – Taking each day as it comes

Life with Behcet’s is unpredictable, debilitating and the diagnosis was life-changing.” Despite the condition she tries to achieve as much as she can each day.

Michelle – Why not me?

In the first year, I think every emotion goes through your head. ‘Why me?’ definitely came up a few times, but now I just look around and think that everyone is dealing with something. I think we all have our various 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 condition called Myasthenia Gravis. “I remember trying to feed my daughter and I couldn’t lift the spoon from the bowl to feed her.

Angela – Breaking free of her condition

Angela has Charcot-Marie-Tooth disease (CMT) which is a group of inherited conditions that cause damage to the 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 busy. That didn’t really change an awful lot in the beginning because I refused to let it once I had my diagnosis. But now, there’s a lot I can’t do. I can’t go for a walk, simple things like doing any form of exercise leave me feeling absolutely fatigued and in an awful lot of 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 issues.

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