A Rare Life Worth Living
There’s something inherently beautiful about the word ‘rare’. A species of wild bird, a mysterious butterfly or a flower with the most spectacular of colours. Even the mention of a diamond with a rare association means that one may infer it to be worth a small fortune. Most would agree it is certainly a gifted turn of phrase.
There is however one version of ‘rare’ that most try to avoid; the one you hope against hope you won’t hear and in particular the doctor won’t say.
There is nothing beautiful in the words ‘rare disease’…
The mention of a rare disease can’t help but bring on a wave of impending doom, with the failings of the human mind presumptuously linking it to associations of ‘contagious’, ‘terminal’, and ‘incurable’.
It can be your worst nightmare, after all chances are - due to its rare classification - the majority of researchers and specialists have not been exposed to the disease for them to devise a suitable treatment or cure. Some would say a doomed existence.
And for many people this would spell the time to lie down, to succumb to this fate. But for one brave Italian woman as her story is one of resilience, and one that most would not even consider an option.
Serena knew there was something wrong and for ten long years she needed somebody to tell her what it was, but nobody could. She went from doctor to specialist, to doctor and then some, all with the prognosis that she was fine. For an entire decade she felt alone as her friends and family agreed with the doctor’s misdiagnosis of hypochondria and subsequently abandoned her.
You see, it is just this problem that many people with rare diseases face when a doctor knows not of the symptoms, they may turn people away as being perfectly fine and or full of lies.
Such was the tenacity of Serena that she never gave up hope, finding her way into the Rare Disease register and proving everybody wrong. Since her rare diagnosis and with a new lease on life, she has dedicated her days to making sure nobody ever has to go through what she did.
Serena now works for UNIAMO (The Italian Association for Rare Diseases) and has channelled that determination into finding answers for others facing the same or similar issues. And as fate would have it, she came across another young man fighting for the same cause, but with a slight twist.
Introducing Italian photographer Aldo Soligno — A man who is daringly challenging this status quo. A man who through his many years as a professional has prided himself on getting the most out of the emotion of his subject. His latest challenge: bringing rare diseases and the people affected to the attention of the world and in the most beautiful way.
Eloquently and justified, Aldo classes these people as living rare lives. He’s spun this horrible phrase on its head — an almost poetic form of justice. For him, he doesn’t see an incurable disease, he sees hope in a journey to tell the world about the trials and tribulations they face and the courage that sees them defy odds in the bid to live a prosperous life.
Teaming up with Serena and UNIAMO, Aldo has just finished touring Europe and doing what he does best — telling stories. With Serena in the background helping to drive the project and Aldo connecting the narrative, they are a powerful team making a huge difference to so many rare lives.
A rare life affects about 1 in every 200’000 people. For Aldo, the amazing circumstance is that they are rare. When he moves from place to place, from city to city, he knows he will never hear the same story twice. And even though he has long left, his memory of the people is ever-lasting and their tales immortalised through his pictures.
I was lucky enough to have helped Aldo with his project through my job at crowdfunding platform kriticalmass. During the project we raised €28.5k of which paid for the tour of Europe and the initial development of the Rare Lives website.
Aldo hopes that through his journey it will bring people with rare lives’ conditions further out into the public eye and encourage others to come out of their shell. The aim was to also spur the leaders of Europe to show more support and to build on the fine work of Aldo, Serena and the countless other organisations that are making a difference around the world.
I’ll leave you with my personal favourite Luca, who has epidermolysis bullosa, a rare skin disease that causes it to be super sensitive and hyper-susceptible to the elements. It’s his courage that like so many others living rare lives that shows you he’s not going to let anyone get in his way and will truly live a rare life worth living.