We are back in the Middle East for another Cystic Fibrosis Around the World blog.
Please note that the brackets [] indicate an edit I made for spelling or language.
Beirut, Lebanon, Anonymous Adult living with cystic fibrosis.
- About how many people in your country have cystic fibrosis?
No one I know, but I guess about 10 people in all Lebanon?
- Do people in your country know what CF is?
Definitely no. And doctors maybe.
- When were you diagnosed? Why were you tested?
I was 8 years old when doctors claimed that I might have CF, but I completely neglected it, because the sweat test was always negative. At 23, I had a lot of troubles with my stomach; I had terrible pain so I went to see a doctor and told him about these struggles. Then he asked for a specific blood test, it was positive. And I was diagnosed with [mild] CF.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
No, not really. Only [a few] people [know], close [friends], my parents and my girlfriend.
- 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?
I don’t specifically take CF treatments, I only take pancreatic enzymes, “[bronchodilators]”, and sometimes antibiotics. Yes [insurance] covers 80 % of them. My insurance if offered privately by my private college.
- Do you have access to drug studies/trials? Do you have access to new medications?
No. I know nothing of this.
- Who is on your CF care team? (Doctors, nurses, etc.)
There’s no CF care team, only a [respiratory] and digestive system doctor.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
There [are] no CF clinics.
- 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 don’t go unless if I feel I’m coughing more than normal, I stopped going to the doctor for stomach pain, [because] I gradually started to adapt.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
I stay in the hospital.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
No, I recently [found out about the Vest] while surfing the internet.
- Are you encouraged to exercise? Specific?
Yes, I’m motivated to go to the gym and exercise often. [I don’t know what other treatments are common in my area.]
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
None, not that I know of.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
I eat a lot, and try to consume high calorie diet, but I feel my digestive system can’t take that much, [which brings] along the pain. No [I don’t have a feeding tube] and no, I don’t [have CFRD].
- What do you wish could be better about your nation’s care for CF patients?
I wish to have at least specialized clinics for CF.
- What do you know about CF Lung Transplants?
It’s hard, and rarely [successful]. Finding a donor, is likely impossible.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
I just finished my master in Architecture, and it was really hard for my health.
- 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.)
I don’t know about any of that.
- 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?
Yes, I just want to add that it’s hard for me to find a job, because my daily routine is to cough 5 to 6 hours every morning. It’s hard and tiring, without mentioning my occasionally stomach troubles. No, [there is] definitely not [anything unique about CF care in my country].
