Being positive
We never pretend to know what it's like living with CF, so do forgive me if this post it a little too optimistic.
Coming to terms with a diagnosis for your two-week old child is a challenging thing and it struck me a few months ago that being positive about CF, wasn't a place we'd permanently reside.
We'd always have downs, as well as ups and it's certainly valuable to recognise when you are in a positive part of the CF orbit.
With that in mind, we attended a parents' evening a couple of weeks ago organised by the splendid CF team at Royal Manchester Children's' Hospital.
Among the presentations, there was one from a chap who has lived with CF since the mid 1970s - about the same time I was born actually.
Among the facts of his story was that his parents were told not to expect him and his sister to make it to their late teens. More than two decades later, he's doing great and still going strong.
Chatting afterwards, it struck me that we are inclined to get hung up on numbers - life expectancy numbers in particular. Given this guy was told he'd not see 20 and is now 42, it rather renders the whole fixation rather pointless.
The other big take away - other that the absolute professionalism and care of the team - was that CF is no longer a disease of children.
Treatment has moved a million miles in recent years and will undoubtedly do so again in the next 20 years.
This blog takes its name form E's blood group [B+] and there are many reasons to be optimistic.
Coming to terms with a diagnosis for your two-week old child is a challenging thing and it struck me a few months ago that being positive about CF, wasn't a place we'd permanently reside.
We'd always have downs, as well as ups and it's certainly valuable to recognise when you are in a positive part of the CF orbit.
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| B+ can be complicated |
With that in mind, we attended a parents' evening a couple of weeks ago organised by the splendid CF team at Royal Manchester Children's' Hospital.
Among the presentations, there was one from a chap who has lived with CF since the mid 1970s - about the same time I was born actually.
Among the facts of his story was that his parents were told not to expect him and his sister to make it to their late teens. More than two decades later, he's doing great and still going strong.
Chatting afterwards, it struck me that we are inclined to get hung up on numbers - life expectancy numbers in particular. Given this guy was told he'd not see 20 and is now 42, it rather renders the whole fixation rather pointless.
The other big take away - other that the absolute professionalism and care of the team - was that CF is no longer a disease of children.
Treatment has moved a million miles in recent years and will undoubtedly do so again in the next 20 years.
This blog takes its name form E's blood group [B+] and there are many reasons to be optimistic.
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