Cystic Fibrosis Around the World continues with an interview from Pakistan! I’d like to give a special shout out to the Middle East Cystic Fibrosis Association for helping out with this project! The MECFA has played a significant role in connecting me with patients from the Middle East so that we can share more and more stories. This post, plus several of our upcoming posts are possible because of their help.
As always, [brackets] indicate an edit for English translation or clarity.
Pakistan, Samreen, adult living with cystic fibrosis.
- About how many people in your country have cystic fibrosis?
There [have been] more than 400 cases reported in Pakistan.
- Do people in your country know what CF is?
No, they don’t have any idea what CF is. Even most of the doctors don’t know much about CF here.
- When were you diagnosed? Why were you tested?
I was diagnosed at the of age 14 right after the CF diagnosis of my brother. I have lost my two siblings to CF.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
My family and a few friends know about my CF.
- 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?
We don’t have health insurance here for genetic diseases.No,our government does not provide any kind of support to Pakistani CF patients.
- Do you have access to drug studies/trials? Do you have access to new medications?
Unfortunately, we don’t have any access to drug studies or trials nor do we have any new medications available.
- Who is on your CF care team? (Doctors, nurses, etc.)
I don’t have any sepacialized cf care team.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
There is no CF clinic here.
- 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 to my doctor very often. I go on a need basis. In case of emergency, I call my doctor .
10. If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
I have only needed IV antibiotics once in my life and I did that while staying at home.
11. Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
Some of the patients do have vest here, but our government does not provide [financial] support in purchasing vest. We have to order devices from US like Acapella, Aerobika etc. Thanks to the internet we can learn so much about CF care and CF treatments.
- Are you encouraged to exercise? Specific?
I want to exercise but [lack] the motivation to do exercise.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
Nothing has been developed in my country for CF patients.
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
Nutrition does play an important role in my cf care. No,I never had a feeding tube nor I have CFRD.
- What do you wish could be better about your nation’s care for CF patients?
I wish there would be a CF centre in Pakistan, where CF patients get access to all CF medicines and treatments free of cost.
- What do you know about CF Lung Transplants?
I have seen a lot of CF patients , including my CF friends in US getting lung transplants and enjoying their second chance of life but there is no such facility available in my country.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
No, I was not encouraged going university. My parents were afraid that going to college would affect 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.)
There is no such foundation.
- 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?