An extraordinary portrayal of people affected by rare diseases

There are the common diseases we’ve all heard of and perhaps experienced ourselves first or second hand. But then there are conditions that crop up only very seldom. Most of us won’t have them — or even hear about them — which makes life all the harder for those who do. 

In the European Union, for instance, a disease is considered rare if it strikes one in 2,000. Most rare conditions affect far fewer people, but when they do occur, the patient’s life will never be the same. 

The Italian photographer Aldo Soligno decided to "give a face" to these people, helping to break the wall of silence that often surrounds their lives. By showing them in pictures, he is also able to educate and inform the rest of us — and what better way to spread empathy and connection! 

 

Una foto pubblicata da @rarelives in data:

 

The goal of his project "Rare Lives" is to depict the reality of such conditions, the serious medical and social consequences that are usually hidden in the shadows, and the experiences of the families trying to support their sick loved one.

In one case, for instance, the genetic disorder osteogenesis imperfecta causes severe weakening of the bones, often preventing sufferers from moving freely and resulting in harmful fractures from even a simple fall or bump.

 

Una foto pubblicata da @rarelives in data:

Living with an "invisible" illness and facing the incomprehension of people around them makes many of these patients lonely. That’s why Aldo focuses his audience in on the real person, portraying them and their families in such human terms that — instead of just seeing them as separate, different, or weird — we learn to relate to them and respect their experience. 

We can also learn greater compassion, which has practical consequences. Think of every time we have to wait for someone in a wheelchair or someone who can’t move as quickly as we want; after seeing these photographs, you’ll find yourself more patient and appreciative of their situation.

 

Una foto pubblicata da @rarelives in data:

Rare Lives also shows the more "normal" aspects of these people's lives, the areas where they thrive rather than suffer!

For instance, 17-year-old Luis has pseudoachondroplasia, a form of dwarfism, and because he had to sit in bed for three months after one of the necessary operations resulting from his condition, he fell in love with film and decided to pursue cinema professionally.

You also get to see the effect on parents, whose dedication and love not only has an impact on their sick children, but also on scientific research and public policy toward cases like theirs.

 

Una foto pubblicata da @rarelives in data:

 

Una foto pubblicata da @rarelives in data:

 

Una foto pubblicata da @rarelives in data:

Aldo has provided such a valuable starting point! The project is supported by the Italian Federation for Rare Diseases, UNIAMO F.I.M.R., and can be supported through Instagram, Facebook, Twitter (@RareLives #RareLives) and elsewhere online.

 

Una foto pubblicata da @rarelives in data:

You can encourage this wonderful work by enjoying the humanity of his photographs and sharing them with everyone you know!

And best of luck to his subjects as they live out their lives with dignity, hope, and continued inspiration. 

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