From "butterfly girl" to warrior: Claudia Campus and a rare disease that "will never take away my will to live"

Claudia Campus is a former "butterfly child", a way of indicating the particular condition of the little ones affected by rare diseases that make them particularly fragile. She was 13 when she arrived from Berchidda in Rome to be treated in a hospital. Now she's 40, just a few days ago, and the epidermolysis bullosa hasn't left her. It is a genetic pathology of the skin that also involves the mucous membranes. There is no curative therapy and advanced specific medications are required every day. It is estimated that in Italy it affects one child every 82 thousand.

He has always shown that he knows how to face all obstacles with determination by repeating his motto: «A life has been given to me, this one. I try to live it every day in the best possible way». Her experience today was imprinted on the pages of "Perfectly imperfect", the book she wrote and presented to the doctors and families she met in the Bambino Gesù ward where she has been "at home" for 10 years.

The aim of the volume is also to speak to young people, especially "the most fragile ones, who do not accept themselves". "If I accept myself - he says - despite all the limits that the disease has imposed on me, including the amputation of a limb, you can do it too, moving forward with courage".

What does it mean to have epidermolysis bullosa?

«A daily struggle, it's a disease that affects the skin, bubbles form similar to third-degree burns, every day they must be treated with medications, even painful ones, I try to grit my teeth. They develop all over the body, even internally. In my case to the esophagus and occasionally I have to be subjected to dilations ».

Do you medicate yourself?

«Until he was standing yes, today I can't. However, I have tried to have as normal a life as possible, this is a disease made up of sacrifices, suffering and many "no"s".

Which ones for example?

"If it were up to the doctors, I wouldn't have to wear jeans, because they could cause injuries, just as simply turning over in bed could create injuries."

What was the development of the disease?

«I was born like this, in the Ozieri hospital in 1983, and my parents had suggested that I be baptized quickly because no one knew how long I could live. The diagnosis was not made immediately but it is normal: at the time we hardly knew what epidermolysis bullosa was. Then a doctor arrived in Sassari from Rome and everything was clear».

What is the life expectancy?

«Those who reach 50 must consider themselves extra-lucky. For me, the milestone of 40 was a beautiful thing».

How did the amputation come about?

«When I was 30 years old a carcinoma was identified in my left foot, recognized not in a timely manner, and I arrived at the Child Jesus when the situation was already serious. The carcinoma has been removed several times, but I felt that the evolution would be dramatic. I finally made the decision to amputate after a year and a half of being on morphine, no sleep and weighing 60lbs. That wasn't life."

What are the biggest concerns today?

"Since this disease is little known in Sardinia, I feel a little anxious to think that if something happened to me, they wouldn't know what to do".

Everyday life?

«My days are all the same unless I have a commitment, or I go to Olbia for a ride, or for shopping. I get up at 9, I wait for the people who assist me, then the medications and it takes hours".

Are rare diseases really a field in which large multinationals do not invest?

"Yes. Studies have been made for experimental treatments, a minimum is invested, I don't know up to how much. However, it is an incurable disease, there are children who do not reach the age of 10. Sometimes bureaucracy also takes its toll, I had to fight tooth and nail to gain access to the "Returning Home" project to support home care for people with very serious disabilities. Do you think that the first time I was excluded. It seems incredible to me but I didn't stop. One thing is always good to keep in mind: all of us sick people too have dignity".

What is his book about?

«Of my life and also of the disease but in a "light" form I don't like to weigh people down. I told about Claudia, how bad I was when I was little. And of all the "no"s I received and tried to transform into "yes". For example, I secretly enrolled in driving school from my father. He was afraid I couldn't drive a car due to hand deformation problems and instead I did it. In the end, I wanted the life of a girl like any other, even with all my load of medications. But I do have some regrets."

Which?

"Not being able to continue my studies. There are no high schools in Berchidda so I went to Olbia: I got up at 5 for medication and was able to catch the bus at 7, I came back in the late afternoon, and I was tired. The hemoglobin values were low, in short, I had to give up ».

What are the messages you want to convey?

«Above all that of hope for young people and fragile people: do not feel different and do not pay attention to what society imposes. We must first of all please ourselves. When I hear of kids taking their own lives my heart breaks. We must first find strength in ourselves. Parents try to help us but they don't always succeed. If I accept myself, who also go to the beach and put on a bathing suit, why should a young man who has – according to him – a difference give up living for the bad thoughts of others?».

The famous phrase “We are all perfectly imperfect”.

«Exactly, what I said at the presentation of the book to the Child Jesus. If I look around I see exactly that».

Was she also a fragile girl?

“Many times, and still sometimes I am. I try to be so, however, when I'm alone, I don't want to show others my fragility, not everyone can understand it".

What were the hardest moments?

«The amputation, psychologically I didn't want support because it was something that I had to accept first of all, alone. And then the dressings especially when I was 13, when the disease got worse. I always say that I stopped playing with dolls and started playing chess with death. And then when my grandmother and, three years ago, my father Tonino passed away».

And the most serene?

«From the age of 19 to 30, I had days made up of friends, discos, beaches. I didn't give up anything, I went out in the morning by car and was able to come back at night».

Isn't it easier to be angry at life?

«Some days I am, when I'm really sick. This disease has taught me to appreciate the little things, the ones that almost everyone doesn't pay attention to. I chase away melancholy by singing. When my father died it was hard, I've been sick forever but I had never thought of a life without him".

Who are the people who most supported you?

«The many people who assist me today and in the past, including Patrizia, who has taken my situation to heart and has been with me for many years, and then my family, my friends and my father's friends. Together with the associations that follow the sick and all the doctors who treat me, if I'm here today it's thanks to them».