Achondroplasia is a form of dwarfism caused by a genetic mutation, affecting one in 20,000 people. In Italy, there are about 2,500 people living with achondroplasia. Italian dwarfs, as opposed to other nationalities, are particularly fond of a procedure called surgical lengthening. This is a long and painful treatment that consists of breaking bones and applying a fixer, to be lengthened by a third of an inch per day. On average, a person affected with achondroplasia is about four feet tall. Thanks to the surgical lengthening of the lower limbs (femur by about four inches, tibia by about four inches), that person can reach a height of about five feet. The best age to begin the treatment is between 12 and 16 years old. The treatment lasts about three years.
The idea of physically stretching a dwarf out sort of blew my mind, so I got in touch with Emanuele Satolli, an Italian photographer who has been documenting achondroplasia sufferers undergoing treatment, to find out more.
VICE: How long have you been working on this project?
Emanuele Satolli: I started in January 2012. I realized that I never met any people with dwarfism in Milan, in the streets or the clubs, so I wondered, where are they? I started looking into it and spoke with the president of AISAC (Association for Information and Study of Achondroplasia). He told me about this popular lengthening procedure, which I found really interesting. I looked into it further and discovered that around 90 percent of Italians with achondroplasia undergo this surgery, while in the rest of Europe it's something like 8 percent.
What is it about life in Italy that makes this surgery so popular?
Well that’s what I was wondering. It’s a very long and painful treatment, but there are also psychological issues involved. These people feel that they have to change their body because they are wrong, or they need to fit into a society that doesn't take their needs into account. It's a very interesting thing to look at. When I met the people undergoing the treatment, all of them were very satisfied with it. They all felt that they had done the right thing, and also that the jobs or successes that they now have can be attributed, at least partly, to the surgery. I think that they are right. They did benefit from this because they felt more accepted in our society. However, in other countries they could be happy without this surgery. So in Italy it's harder for dwarves to exist without this surgery?
Yes, of course. Without the surgery it’s very hard for them to live a normal life. What other explanation can there be for 90 percent of achondroplasia cases opting for lengthening? If you look at the United States, or other European countries, the percentages are much smaller. It is only in Spain that you get a comparatively high number of lengthening surgeries, but still nowhere near Italy’s rates. Also, when parents talk to the doctors after birth, the doctors just say: "Don't worry, when he or she is 13 years old, he or she can have lengthening surgery and everything will be fine." It’s a cultural approach from the beginning.
Did you meet anyone who was unhappy after having the surgery?
No. Everybody was happy. I mean, even basic daily things like taking the subway were hard for them before—they lacked independence. This one guy I met was still in a lot of pain a few weeks after the femur surgery, but he was happy. He knew he had to undergo more surgery but was still very excited about becoming independent. How much does this surgery cost?
Well, in Italy the government covers almost all the costs of the surgery. But the costs of the extensive physiotherapy fall on the patient. For the femur surgery, the tibia, and the arms, you are recommended one year of physiotherapy. Also, the main centers for this surgery are Milan and Genoa, so obviously people with achondroplasia from the south, for instance, must travel there with their families and stay for some time. The cost is still considerable.
Do you plan to follow up with the people you met?
Yes, I hope to do that. Especially with some of the younger people I met, who were just at the beginning of their treatments.
Did anyone have reservations about being involved with the story?
Not really, most were happy to be involved. Many told me they decided to do it in order to promote AISAC, or to encourage knowledge of the problems they have in Italy and build a wider awareness of achondroplasia.
See more of Emanuele's work here.
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