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Fri 09 February, 2018

Meet Mirina

Mirina stars in the Rare Disease Day 2018 official video and is living with Ehlers-Danlos syndrome. She was diagnosed at the age of 4 and has been living with the rare connective tissue disease from birth. Ehlers-Danlos affects the joints and can cause joint dislocations and hyperextensions. It can also cause fragile skin and bruising. Mirina tells us that it also leads to chronic fatigue and difficulties walking among other symptoms. As she has lived with it from a very young age she knows the disease well and recognises its constraints. Despite this she still is able to live as normal a life as she can whilst still respecting the limits of her body.

Obstacles in education

She has found that in education there can be a lack of understanding of Ehlers Danlos, in part due to its rarity. This is common to many rare disease patients due to the lack of knowledge and awareness of the problems caused by their diseases. Mirina’s disease is also not visible which meant that in some cases the effects of her disease were not taken seriously by her teachers. She believes that training adults about rare diseases is the key to changing the attitudes.

Support of friends

But it is her friends, she says, that are much more conscious of the challenges that she faces. Though she doesn’t go into too much detail, as she does not want to alarm them, she explains that she is fragile (joint and muscle fragility mostly) and that she tires often. They are therefore sensitive to her limits and consider these when making plans so that she is included. In so doing they help to allay the feelings of isolation that are felt by so many rare disease patients whose disease excludes them from social activities.

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