Thanks again to CF Europe for helping secure this week’s interview!
Istanbul, Turkey, 11-year-old living with cystic fibrosis (interview completed with help from parent)
- About how many people in your country have cystic fibrosis
There are about 3500 patients registered, but the actual figure is estimated to be much higher.
- Do people in your country know what CF is?
Almost no one knows what CF is. And the people who somehow have heard about it do not really know how the therapies have developed, they simply think you won’t live long.
- When were you diagnosed? Why were you tested?
I was diagnosed when I was 8 months old. I had a sweat test first and then a genetic test
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
I was always encouraged to be open about my CF. Since I was very little, my father always encouraged me to be open so that CF will not limit my daily life and I can have my therapies when friends are around. I am very open in this sense to my close friends, but I do not necessarily announce it to the new people I rarely meet. I don’t hide it but it may be complicated to explain it to everyone you are in contact with. It is much better to let people with whom you are close know about it. As for the family they all know and have been very supportive. My cousin who is one year younger than me has always supported me, sitting together with me when we were very little, while I was doing my chest physiotherapy or having my nebulization.
- Does your insurance/healthcare cover costs? Does it fully cover all medications and treatments available to patients with CF? Does government provide your healthcare or is insurance offer privately?
Private insurance system is totally insensitive about CF and other rare diseases. They do not provide any insurance to people with pre-exiting conditions. I probably cannot even buy a travel insurance policy to cover simple accidents etc. if I declare my condition. Thanks to our state health system the government provides most of the medications. We just do not have access to the new drugs that are life changing. This is so important now, but with the prices that the manufacturers of the modulators ask, our government will not be able to provide them and it is so sad to see that there is almost a cure there, but you will not be able to have access to it while seeing how they change the lives of people using them.
- Do you have access to drug studies/trials? Do you have access to new medications?
We do not have access to trials and no access to new medications
- Who is on your CF care team? (Doctors, nurses, etc.)
These are still very limited CF centers in my country, luckily, I have access to one of them where there are doctors, a nurse and a dietician. But for most of the country, there are no centers, patients have to travel to other cities to see a specialist doctor. I admit that I am a lucky CF patient.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
It is 1 hour driving distance. There is no such thing as an adult clinic. The number of adult patients is increasing now so there is a need for adult clinics. I am so comfortable and feel so safe with my pediatrician doctors that I would like to continue with them as I grow up.
- 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 am supposed to do it every three months, but it sometimes takes longer as my parents monitor me closely.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
We can take them only at the hospital.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
The Vest is in my life since I was 4. My dad carries it everywhere we go. He told me it’s not a typical treatment in my country as it not covered by the state health system and people cannot afford it. You have to buy it yourself and it is a fortune, say my parents. Luckily, I own one. My dad says “I bought you your first luxury sports car when you were 5.” He told me it is not easy to have access to a chest physiotherapist as there are very few of them.
- Are you encouraged to exercise? Specific?
I am more than encouraged to exercise. I play basketball and handball. I have a trampoline. My parents urge me to swim. I started recently wind surfing in summer and skiing in winter. As I said before, I know I am very lucky, my parents have enough resources to support me the best they can. But not only the resources, they have also dedicated their time and they have even designed their lives to be able to support me. I may in good condition, but I know it is not easy to be like this. I will always have exercise in my daily life.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
No medications or therapies are developed here.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
I think nutrition plays a big role on my CF care. I am so tired of being monitored and followed closely by my parents about what I eat, when I eat and if I took the necessary number of enzyme capsules! It sometimes drives me mad. My friends do eat whatever they want and whenever they want. I can’t say I do the same. My life is very controlled in this sense, and there is continuous interruption by my parents. I see and know that they are also tired of this, and I have understood that this is really important if want to stay healthy and live a normal life. So, I’ve simply accepted it. I eat a lot, and I eat whatever they give to me. I carry enzymes everywhere I go. They are in my pockets, backpack, sports bag, in my relatives’ houses, in the school infirmary. I do not have a feeding tube. I do my best to keep in good shape so that I won’t need one. But if someday I need it, I will of course learn to live with it too.
- What do you wish could be better about your nation’s care for CF patients?
I wish every patient could have access to a CF center. We have to go to different doctors, testing etc. so many times. It is good to manage it all at one place. And I wish every patient would have a Vest of his own. And finally, most important I wish we could have access to the new and life changing drugs. Life would be much easier, and many burdens would decrease. It is not an easy disease to live with. I spend at least 1 hour for therapies and I take about 15 pills every day and this will increase as I grow. I have to go to the hospitals, doctors, tests, checkups regularly. And I have to run away from and fight with viruses and bacteria without a break. After this COVID crises, people probably have understood what this really means. This was and is our normal, not the new normal!
- What do you know about CF Lung Transplants?
I don’t know much about it. It does not sound like an easy thing at all. But I have read that there are very successful cases.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
I am still in my secondary education
- 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.)
There is a very good association in my country. They are trying to help the patients and their families. They are mostly trying to educate the patients and families who are new to the disease and show them the right direction. And they also try to provide the nebulizers to the patients who cannot afford to buy the right one