Cystic Fibrosis Around the World heads back to the Middle East to talk to an adult living with CF in Jordan! Again… thanks to the Middle East Cystic Fibrosis Association for helping to make this connection! We did have a pretty significant language barrier throughout this interview. Yazan had to use a translator program, so some of our answers may be a bit confusing or unclear. We did our best to make this as readable as possible. As always, [brackets] indicate an edit for grammar or translation.
Karak, Jordan, Yazan Abdel Hakim El Mahadeen, 25, living with cystic fibrosis.
- About how many people in your country have cystic fibrosis?
The number of people in our country [with CF] ranges from 75-100.
- Do people in your country know what CF is?
No one knows what [cystic fibrosis is]. Some doctors [find it difficult to diagnose it] due to the lack of awareness.
- When were you diagnosed? Why were you tested?
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
Yes, everyone knows I am a [patient]. I write my life story with cystic fibrosis and my suffering with recurring infections.
- 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?
The insurance does not cover the costs of treatment because I am 25 years old and I have no work because of my health.
- Do you have access to drug studies/trials? Do you have access to new medications?
I do not, but I try to access drugs, but to no avail. There is no medicine for [this] disease in Jordan. Only Creon.
- Who is on your CF care team? (Doctors, nurses, etc.)
Doctors do not know the symptoms of cystic fibrosis and do not know how to deal with patients with cystic fibrosis.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
No difference…We do not have a special clinic in Jordan for patients with cystic fibrosis.
- 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?
It is not easy to get an appointment, but I go to a private doctor and transfer to a hospital if necessary to [go inpatient].
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
[If antibiotics are needed, I’ll stay in the hospital for 7 to 10 days].
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
Yes, [Vest] is a typical treatment option. I do not have my own medicine. I hope to receive treatments.
- Are you encouraged to exercise? Specific?
[Answer was unclear]
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
I am receiving the same drugs, [they] are not new.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
I have diabetes. [The rest of the answer is unclear]
- What do you wish could be better about your nation’s care for CF patients?
I want to spread awareness and culture about cystic fibrosis and save the remaining patients in Jordan. In 2017, 4 friends died in Jordan.
- What do you know about CF Lung Transplants?
[I do not know].
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
I went to college and finished my studies. I am a chef, but they refuse [my] work in [restaurants] because of [my] frequent absence and coughing in front of customers, so I stay home, and this is very sad.
- 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 are no institutions. We want to live in peace [and] only want new [drugs]…We want our country to pay attention to [CF patients].
- 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?