Changemaker Profile


I live with an invisible rare disease called polymyositis; it is an autoimmune disease which effects the muscles. It can cause muscle weakness and pain, often on both sides of your body. Rare diseases take an average of three to four years to be diagnosed, however in my case it took almost eight years. The doctor said there is no cause for this disease and no cure found yet, but we didn’t give up. We went to almost all the major hospitals in India to find out a solution but got to know from every single Doctor that there’s no cure for this condition, but there are treatments that can help with symptoms and can improve your muscle strength and function.

Once you tell people that you have a rare disease, they start treating you differently. They start to sympathise with your condition. They start feeling sorry or pity for you. Although, we truly appreciate their support and concern but believe me, that’s the last thing we (living with invisible disease) want. That was the main reason that I packed my bags and moved to another city from my hometown to stay away from pity. I Never told anyone in the new city about polymyositis and everyone treated me equal.

Artist Profile

Ameena Rojee

Ameena is a London-based freelance portrait and documentary photographer with a background in campaign production and visual content marketing.

“I have grown up with a very visual skin condition, Vitiligo, which is why this commission is especially exciting for me. Having a skin condition like this has massively influenced the way I see and interact with the world in that I am always extremely aware of others, as well as influencing the work I make - it has led me to become somewhat of a portrait artist, intrigued by the uniqueness and individuality of each person I collaborate with.”

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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