

Kadeem M
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Kadeem M
MemberDecember 13, 2019 at 1:31 am in reply to: “Does Educating Others About Your Disease Feel Like a Blessing or a Curse?”Personally I feel that if I have to educate someone about Cystic Fibrosis, I have to give them a crash course. And where there are grey areas, they would ask questions in which results in me going deeper into a lecture syle of teaching. Personally, I find it a blessing in a sense where I am able to educate someone about a topic I know so well because of personal experiences. I may not be able to answer the hardcore questions about different mutations or chemical/protein imbalances that come with CF because I don’t have that science knowledge. But overall I am happy to provide new information to other.
I guess the curse is when the individual(s) chose to pity or try to accommodate too much to the point where you lose all sense of independence.
~Kadeem Morgan
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This is very well thought out and written.
I found throughout my paediatric care (age 0-18), it was a lot easier to develop a sense of trust with my healthcare team regarding my overall health. Main factor being that since i was a minor, for majority of the years my parents would be making my medical decisions, and they never ever disagreed with my CF team. So, for me the trust came naturally. I found myself questioning the levels of “trust” with my CF team when I 1. Transferred to adult care 2. When I became a transplant patient. Two very new sets of CF teams, but luckily there was always at least one familiar face that stayed consistent throughout each transition.
Nonetheless, i still was able to build a significant amount of trust with my new teams, as i understood that it wasn’t their ideal interest in seeing a patient of theirs dead, so they would do anything and everything humanly, and scientifically possible to keep me alive and fighting. As so they did.~Kadeem M.