If the 20-30 year life expectancy hadn't been stipulated, I was going to suggest progeria. There was a recent well-known case of one progeria sufferer (Sam Berns, mentioned in the Wikipedia article) living until 17, but much longer than that sounds like it would be an extraordinary circumstance. But everything else might fit the requirements.
Cystic fibrosis does sound closest to meeting your needs here. Is there a reason that's a rule out? Individual cases can be different enough to give you plenty of flexibility.
You might want to look out the documentary on Alex Stobbs, called A Boy Named Alex, I think, and then there was a second one. He has CF and the documentary followed him through his last year or so at school and first at university. Seems to me to meet all your requirements.
Ditto that cystic fibrosis does all you need. There are factors like tissue type and degree of severity that can vary a bit, so while you do get cases of very short life and unusually long life, the timeline you're working on is bang in the middle of the current general prognosis. The exception is oxygen tanks, which I don't believe are commonly used. There is lots of info on it on the NHS website: http://www.nhs.uk/conditions/cystic-fibrosis/Pages/Introduction.aspx
NB the only caveat with CF is that it is a condition that disproportionately affects different ethnic groups. It's most common in people of northern European ethnic origin, much less so in other groups, but it's still entirely plausible in any population.
Maybe treatment is different in different countries and it does change a lot with CF with advances all the time, etc. but 5-6 years ago it was common among PWCF to carry backpack tanks that were portable enough for school and work. Sometimes oxygen is just used at night, so it could be written either way.
If you need to tinker with symptoms, the OP will have a lot of room, with this caveat: it's plausible to anyone familiar with CF to say "well, that symptom isn't going on with this person" but the general public may be confused if the character doesn't fit the stereotypes of the disease.
For another docuimentary, 65 Red Roses is a look at teens/young adults who've reached the "need lung transplants" stage of CF and some of the factors that can lead to death. The title person's LJ is still preserved as a memorial as well if you want to look through that for the personal impact.
When I was in high school (late 70s) there was a girl who had cystic fibrosis, and she was pretty much like what you're describing. She seemed reasonably normal, but always had to be careful not to push too hard, else she'd end up gasping for air. I didn't really know her that well, so wasn't privy to details, but it was general knowledge that she was going to die young, and it creeped us all out a bit, even though we (mostly) tried to be nice to her in that awkward teenage way.
Comments 7
Reply
Reply
Reply
NB the only caveat with CF is that it is a condition that disproportionately affects different ethnic groups. It's most common in people of northern European ethnic origin, much less so in other groups, but it's still entirely plausible in any population.
Reply
If you need to tinker with symptoms, the OP will have a lot of room, with this caveat: it's plausible to anyone familiar with CF to say "well, that symptom isn't going on with this person" but the general public may be confused if the character doesn't fit the stereotypes of the disease.
Reply
Reply
Reply
Leave a comment