What's it like to be one of 100 people in the world who suffer from a rare rapid-ageing condition? Sammy Basso shares his experiences with Euronews.
What's it like to be one of 100 people in the world who suffer from a rare, rapid-ageing condition? Euronews spoke to Sammy Basso, the longest survivor of progeria.
Basso, 22, from a town near Venice, has the extremely rare genetic condition that accelerates premature ageing.
The disease affects such a tiny number of people in the world — just 130, and only four in Italy — although in Italy it is not even recognised as a rare genetic condition.
Day to day, Basso copes with the condition by understanding its physical limits.
Fighting the daily battle
"Progeria causes various physical impediments, causes problems for the heart, muscles, blood vessels, joints and bones. It is a systemic disease. In everyday life, we are not able to jump, run, walk for a long time, we always have to be careful not to overdo it," said Basso.
"Being a disease that affects the heart and blood vessels, it forces you to be constantly monitored, have frequent medical visits and not to get too tired."
Basso told Euronews his family and friends help him deal with the illness, "in every moment they make me remember the important things in my life, they make me understand that the disease is just a little part of who I am. They give me faith and strength to wake up in the morning and to go to bed in the night."
He said the condition's progression limits his body, but not the mind.
Academic and research aspirations
Basso tells Euronews that he feels like anyone who is 22 years old: "Nothing changes, I'm searching to give a sense to my life, with progeria or without. The only different thing is that I know that I have a responsibility, to say to all the people how much research I do for me and how much can do for all."
Despite being given only 13 years of life expectancy when diagnosed at 2 years old, Basso graduated last month at the University of Padua in Natural Science - Molecular Biology, with a thesis on the Spanish research on the genetic condition.
Basso said the research has always been one of the most important goals of his life.
In order to spread the knowledge about his illness and to promote research on it, Basso founded the Italian Association Progeria Sammy Basso (AIPro.Sa.B.).
The only other organisation in the world studying Basso's rare condition is the Progeria Research organisation based in the US. Basso speaks regularly about progeria and promotes public awareness of the disease.
Basso is known for having documented the journey he took after high school along Route 66 in the US, during which he wrote a book "The Journey of Sammy" and recorded episodes for television, including National Geographic Italy.
He told Euronews, "My favourite place of Route 66 was the Monument Valley. I felt the power of the nature inside and outside me.
"We saw it with two rainbows just after it rained and I met Larry, a Navajo guide who gave me a Navajo name: “Chaànhaàgahiì” that means 'person who has a long way to go'. It was beautiful because when you have a Navajo name you are part of the tribe, so...I’m an Italian Navajo!"
He said his favourite celebrity is Matt Groening, the creator of The Simpsons, whom he met. "He's a believer in their dreams and they make us happy or surprise with their creations...magic!" Basso said of Groening.
When Basso isn't studying or working on research, he spends his time with friends. "When we are together we love to have party and fun, we eat together, we drink together and we play together. We talk about adventure and we do all the stupid things that every person does at my age."
Basso said there are very few in the world with his condition — and this is one of the hurdles, especially creating awareness.
“Given the fact that there are very few cases, it is also difficult to create something big. I am familiar with almost all European cases and with a large proportion of the US cases. They are friends, I don't have to explain them anything because they live in first-person what I live.
"However, we are all different, all of us. Some are engaged in the research like me, others are not.”
He also shared that his battles are on two levels: "The first is scientific dissemination. We try to make everyone understand what progeria is."
"Especially the doctors who often don't understand the disease and ask us for explanations. And then the fundraising: we do every kind of possible events, from musicals to shows and sports tournaments”
“Physically it is quite tiring, we have very little private life. You have to be present and continue to carry on this mission."
Basso told Euronews there are constant scientific advances on research in progeria and other factors concerning the condition.
He said medicine to control the condition is being researched. “The third clinical trial is underway — a drug seeking to reduce the level of progeria, the protein that causes the disease."
"I would like to become a researcher to continue studying progeria, other diseases and to have a better understanding about human beings."
Inspired at an early age, he said, "I saw that when I was 5 years old, the researcher and the passion with which they worked and I would like to be like them for helping the world in my little way."