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    • #18359

      Sumaiya Shahid’ lives in Pakistan. For Sumaiya, being a CFer and living in Pakistan has been very difficult and heartbreaking. Families don’t know about the condition, doctors are not CF trained, and treatment costs are not affordable.

      But her faith and determination to defeat the disease have helped her a lot. She has been blessed recently with some online support from a trained doctor from overseas, and she now belongs of a group of families with CF who support each other.

      Sumaiya, we are so happy to hear things are looking up!

      Now back to our CF Community: How do you manage the frustrations that can come when seeking the right healthcare?

      To read the rest of Sumaiya’s story, and learn more about life in Pakistan with CF , click here.

      Our #31DaysOfCF initiative is running for the entire month of May. Each day, we are featuring a different story, and a different view of life with CF. To read all of the stories, visit our website.

    • #18366
      Paul met Debbie
      Participant

      Yes it must be hard to live in a situation where there is no adequate care available. One can only endure and surrender and look outside the box.

      It reminds me a bit of the story of my brother Rudy, who died before I was born. He had CF as well, and in those days (1952 – 1959) even in a modern country as the Netherlands, not much was known about it. There was no medication, not even pancreatic supplements and only the most basic of antiobiotics. He was wrongly diagnosed at first as having celiac disease and put on a diet of (only!) bananas and milk. Even then he thrived reasonably well, until he contracted the measles for which no vaccine was available at that time.  This soon developed into pneumonia from which he died within 2 weeks. Having the same genetic profile as he, I was so fortunate to be born 11 years later and got much better advanced medical care, which made me dance up until today.

      Healthcare in the Netherlands is well available, and my cf team is great. There are not many frustrations. The only thing I always remember is to keep thinking for myself. The doctors have their knowledge, but I am the only one who feels the body inside and uses also intuition to assess the situation. Working together in that way is a good thing. Knowledge without intuition is abstract and crude, intuition without knowledge is sometimes missing the most recent medical developments. To combine these is conducive to prevent frustration and get the best possible outcome.

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