We head back to Europe for this installment of Cystic Fibrosis Around the World. Today we meet Clara, she is 16 years old living with cystic fibrosis and heading towards the transplant list. Clara offers fantastic commentary for the state of things for people with CF living in Italy.
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Siena, Italy, Clara, 16 living with cystic fibrosis.
- About how many people in your country have cystic fibrosis? In Italy about 6000 people have CF.
- Do people in your country know what CF is? I’d not say it’s common for people to know what CF is and how it affects our lives, but people saying “oh yeah I heard of that” has happened more than I thought it would. Just the other day a man saw me with oxygen and said “That’s CF right?”
- When were you diagnosed? Why were you tested? I was diagnosed in May 2002, less than two months after I was born. I was tested after digestive problems and related growing issues.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF? No, I wasn’t. When I was younger I didn’t know some things I was made fun of were related to my disease and I would only be told after someone made fun of me. Now I’m starting (or being forced) to be more open about it, because I think it’s important that people see how bad this disease can actually become. My family obviously knows about my CF and so do my friends, but it’s not the first thing I tell others about myself.
- Does your insurance/healthcare cover costs? Does it fully cover all medications and treatments available to patients with CF? Does the government provide your healthcare or is insurance offered privately? Yes, the healthcare system here is public and costs are covered by the government. Regular people have to pay a small contribution for minor procedures, but larger procedures are always covered 100% by the healthcare system. People with Cystic Fibrosis and similar conditions (eg. cancer patients, transplanted people, and many others) also get an exemption code, which allows us to not even pay the contributions.
- Do you have access to drug studies/trials? Do you have access to new medications? Yes we do have access to studies. When I was younger I was offered the chance to participate in a study for Cayston for example. I also know that Orkambi and other new meds are available for us.
- Who is on your CF care team? (Doctors, nurses, etc.) I have doctors, nurses, physiotherapists, [nutritionists] and psychologists.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF? My CF clinic is about an hour and a half away. The clinic itself is in a children’s hospital, so the only difference that I’m aware of is that after you turn 18, admissions are in the adults’ hospital nearby.
- How often do you go to the doctor (non-emergency)? Is it easy to get an appointment? What do you do in case of emergency? I get appointments once a month usually, and if I have an emergency I can go to the ER and be admitted, but usually I’ll just write an email.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital? I have done IVs at home in the past, but lately I’ve been needing more attentive care and I’ve stayed in hospital all the time.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not? No, no one does the Vest here. We use the PEP mask (or BiPap machines like I do) and we loosen up the mucus by blowing until it crackles in our lungs, then we blow a little more delicately to bring it further up and then we spit it. It’s incredibly draining.
- Are you encouraged to exercise? Specific? Yes I am, I have a specific program for my cyclette (bike) that I do every day.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs? I might have misunderstood the question but as far as I know, Italians have participated in studies and researches but have never developed a CF specific medication – however new drugs developed in other countries are available fairly quickly here.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)? Nutrition has been a part of CF I struggled A LOT with as a kid. I was never hungry, never gaining weight and stepping on the scale was a huge stress. I don’t know how, but I managed to catch up, and now I’m about to be put on an adult transplant list despite still being in pediatric age because of my good BMI, and I’m the only teen who is getting on the transplant list without a feeding tube right now. I have a little bit of diabetes when I’m on higher prednisone but it just requires me a few units of slow release insulin to control.
- What do you wish could be better about your nation’s care for CF patients? I feel like they could encourage us more to build a community. I always felt pretty alone and I think an important psychological aspect is knowing you are not alone, some people feel like you and understand you. Friendships between CF people are not actively encouraged, however as I asked them if they could “set me up” with another person with CF to talk to, they started working on it,
- What do you know about CF Lung Transplants? Almost everything ;))
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged? It has honestly never crossed my mind, my life has just been that wild. Actually I’m too lazy for university, but I think I will need to do it anyway.
- What is the National CF Foundation (if there is one)? Does this Foundation (if there is one) provide assistance in every day life and education? (example: scholarships, transplant aid, educational materials, etc.) Yes, LIFC organizes events, meetings, they are financing a study I’m participating in now and they offer support for patients and families.
- Is there anything else you would like to add? Is there anything specific or unique about CF care in your country compared to the rest of the world that you know of? Not that I can think of!