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Kelsey
05-08-2010, 10:32 AM
I have just started outlining a potential new project. It's coming together quite well, but I need a disease! I've been googling, and found a couple that might work, but ultimately haven't found the perfect one, and so I thought I would toss it out here to see what you guys came up with.

1. Preferably genetic
2. A disease that can show up at any time (one of my characters is in her early 20s, the other is about 50).
3. It would be great if it needed some kind of constant treatment (i.e. blood transfusion).
4. Either terminal, or not a super huge survival rate.

Maybe I am asking too much, or it's a shot in the dark, but if anyone has any ideas, I am excited to hear them.

maggi90w1
05-08-2010, 02:38 PM
How about Chorea Huntington, genetic, shows up around 40, but can show up earlier or later, depending on how many repeats of the "bad" area you have, is terminal, doesn't need constant treatment, but meds make the disease more manageable.

Kelsey
05-08-2010, 09:15 PM
Thankyou....I'm off to google...:)

codytull
05-08-2010, 10:41 PM
On Discovery Health, they have a show called Mystery Diagnosis about people who've had to go from doctor to doctor because no one can figure out what disease they have. It's always something rare. On their website, they have a ton of information about rare diseases and their symptoms and treatment options:
http://health.discovery.com/features/rare-disease-day/top-20-diseases.html

backslashbaby
05-09-2010, 06:24 AM
Marfan's Syndrome? The heart problems could need treatment and certainly could be fatal or near-fatal. Technically, they would have had the disease their whole lives, but the aorta bursting or getting scarily weak could happen at either of those ages.

Also, there's Ehlers-Danlos Syndrome, which can be very similar except the abdominal aorta is more often the one to go. It's a set of genetic diseases that can be recessive, btw (I have it, but probably not the arterial kind that's so dangerous). I can't recall if life expectancy for the arterial kind is usually above 50, but certainly someone could go that long, especially with treatment.

The aorta surgery for Marfan's usually works well, whereas in the bad kind of EDS, surgery is hard because the skin splits easily, too.

MoonStone
05-09-2010, 10:03 AM
How bout something well known, and effects a lot of people like diebetes (there'd be a lot of ppl reading who can relate personally to that or know someone in their life). It effects a lot of people and can come at any age. You are more likely to have diebetes if you have a family history of it too. Many people have seizures as a result and they need constant treatment- meds , diet etc..and it is very dangerous and most die earlier than should.

threedogpeople
05-09-2010, 09:41 PM
How about neurofibromatosis (aka Elephant Man's disease)? There are two kinds - NF1 when shows by age 4 and NF2 which doesn't show until adulthood.

backslashbaby
05-09-2010, 09:44 PM
I agree that a well-known one is the best way to go, if possible. Even in real life, people's eyes glaze over if you try to explan the rare ones with more than a sentence or two! :) Unless the symptoms are fascinating in their own right.

GeorgeK
05-10-2010, 01:17 AM
What do you want the disease to do?

Alwoody
05-10-2010, 02:15 AM
How about neurofibromatosis (aka Elephant Man's disease)? There are two kinds - NF1 when shows by age 4 and NF2 which doesn't show until adulthood.

NF is not elephant man's disease. My son has NF1 and it is not what the elephant man had.

NF1 is usually diagnosed in childhood unless there are no problems present. It is rarely fatal. NF2 can be fatal, as tumors have an increased chance of turning cancerous.

I am actually working on a new project with a MC with NF1.

Kelsey
05-10-2010, 03:23 AM
My MC has to get a disease, and choose not to have it treated. For example, if it were a blood disease that needed constant transfusions, she would not get the transfusions. But I don't really want it to be a disease that has visible affects.

It's debatable whether or not I even need to name or describe the disease. The parts that I have written so far are almost benefited by the mystery. But I still might want to know what she has...

backslashbaby
05-10-2010, 04:32 AM
Oh! My other disease might work great (lol!) :D It's not entirely genetic, but is has a large genetic component (and it's quite strong in my family). Pernicious Anemia. If I didn't get b12 shots, I'd go insane and die or have a heart attack and die -- with lovely neurological symptoms that get progressively worse.

B12 shots are not so dramatic, but the disease is truly stunning without treatment. It was uniformly fatal until the 20th century. What is good if you'd like your character to seem normal (but frailish) is that the heart attack could happen while she's still pretty, not insane, etc. There was a suffragette who had it who seemed fine to others but died suddenly of it. She had to have felt weak, etc, but apparently not enough to even stop travelling.

Cyia
05-10-2010, 07:23 AM
A person who is a hemophiliac could contract a blood borne disease via transfusion in their 20's or 50's. It wouldn't be genetic, but it could be something aggressive that the patient would refuse treatment for.

Kelsey
05-10-2010, 08:00 AM
Oh! My other disease might work great (lol!) :D It's not entirely genetic, but is has a large genetic component (and it's quite strong in my family). Pernicious Anemia. If I didn't get b12 shots, I'd go insane and die or have a heart attack and die -- with lovely neurological symptoms that get progressively worse.

B12 shots are not so dramatic, but the disease is truly stunning without treatment. It was uniformly fatal until the 20th century. What is good if you'd like your character to seem normal (but frailish) is that the heart attack could happen while she's still pretty, not insane, etc. There was a suffragette who had it who seemed fine to others but died suddenly of it. She had to have felt weak, etc, but apparently not enough to even stop travelling.

Okay, I'm intrigued. Questions:

(#1) From the little bits I read, it seems my character would have to have been born with this, as she is 23 and the disease apparently can take quite a few years to become apparent. When I googled it, I also read that B12 pills were a common form of treatment. Are there any circumstances under which it would be realistic for my character to be prescribed pills as treatment before shots?

(#2) If not, who administers these shots? The patient, or the doctor? And does the treatment always start out daily? I also read that there is a weekly and then monthly shot treatment...

(#3) Assuming she just discovers that she has this in her early 20s...is it realistic that she wouldn't do the treatment right from the beginning? My story takes place over the course of about a month. Ideally, she would find out that she has this and *not* take any form of treatment, but I am worried that it would have to be a dramatic event, symptoms-wise, that would lead to the discovery of the disease in the first place.

Libbie
05-10-2010, 08:10 AM
A good friend of mine was born with a kidney disease and needed a transplant before she was three years old. Now, in her late twenties, her transplant has finally rejected (as they all do, eventually) and she will soon be on the waiting list for a new one. While she waits for a new transplant, she has to do interperitoneal dialysis twice daily. She's able to do this herself (Google it -- pretty cool!) and is enjoying her life like normal. However, recently she had to go in for gall bladder surgery (a complication of her delicate health) and while recovering from surgery had to have a neck catheter inserted for "in-house" dialysis -- the kind where they actually take out your blood, detoxify it, and then return it to your body.

That might be just what you're looking for.

Kelsey
05-10-2010, 08:39 AM
A good friend of mine was born with a kidney disease and needed a transplant before she was three years old. Now, in her late twenties, her transplant has finally rejected (as they all do, eventually) and she will soon be on the waiting list for a new one. While she waits for a new transplant, she has to do interperitoneal dialysis twice daily. She's able to do this herself (Google it -- pretty cool!) and is enjoying her life like normal....


I like the idea of the transplant rejecting.... My character flees from home, from her family, from the country. So would she be able to do this without being in her normal environment? What would happen if she just didn't do it for about a month? I am assuming she would die, so is there a period of time before the kidney rejects where one *knows* it is going to reject and is just waiting for the inevitable time when one will have to have the twice daily dialysis? <---- If so, that might totally work :)

MAP
05-10-2010, 10:29 AM
Is cancer just too boring or obvious? It does fit all of your criteria.

1. Preferably genetic

There are many forms of cancer that are genetic.

2. A disease that can show up at any time (one of my characters is in her early 20s, the other is about 50).

Cancer can show up at any time.

3. It would be great if it needed some kind of constant treatment (i.e. blood transfusion).

It could need constant treatment depending on how serious it is.

4. Either terminal, or not a super huge survival rate.

It could be as terminal as you want it to be.

Kelsey
05-10-2010, 11:42 AM
Is cancer just too boring or obvious? It does fit all of your criteria.

1. Preferably genetic

There are many forms of cancer that are genetic.

2. A disease that can show up at any time (one of my characters is in her early 20s, the other is about 50).

Cancer can show up at any time.

3. It would be great if it needed some kind of constant treatment (i.e. blood transfusion).

It could need constant treatment depending on how serious it is.

4. Either terminal, or not a super huge survival rate.

It could be as terminal as you want it to be.

When I originally started playing around with this idea a couple of years ago, it was cancer. I wouldn't be disappointed if I went with cancer, but I'm not getting that clicky 'this is right' feeling when I think about it either. I can always go back to it, but I just want to see what else is out there.

SadieCass
05-10-2010, 06:59 PM
Okay, how about this...

Cystic Fibrosis. It is certainly genetic. It very often shows up at a young age (1 or 2) but it has happened that no symptoms ever arise. Our Pulm (top in her field) has one family where the daughter showed no symptoms until she was 30 and AFTER her diagnosis the mother was tested and found to have it at the age of 60 w/o any major symptoms.

Daily treatment is required in the form of breathing treatments and a ($2500) machine that helps vibrate the mucous free from your lungs. It can also require regular enzyme pills because the pancreas can be blocked as well by mucous. Very often it eventually leads to the need of a lung transplant.

Sooo...if it's a late developer it could be found and worsened by a case of pneumonia, which could lead to a rapid decline in her state of health.

Just an idea (We've got an "unusual" case of CF in our house...so I know plenty about 'atypical' CF).

http://cff.org

Libbie
05-10-2010, 08:23 PM
I like the idea of the transplant rejecting.... My character flees from home, from her family, from the country. So would she be able to do this without being in her normal environment? What would happen if she just didn't do it for about a month? I am assuming she would die, so is there a period of time before the kidney rejects where one *knows* it is going to reject and is just waiting for the inevitable time when one will have to have the twice daily dialysis? <---- If so, that might totally work :)

Well, interperitoneal dialysis requires some serious supplies. If your character is on the run, that might pose some problems. I've traveled with my friend before and we had to dedicate a lot of car space to the boxes of dextrose bags she had to bring along with her.

Kidneys -- and thus IP dialysis -- remove waste products from your blood. If you didn't have a fully functional kidney or you weren't able to do dialysis, you would quickly become very ill. Once when her schedule got off a bit she actually lapsed into a diabetic coma thanks to her body's inability to process the natural chemicals in her blood. It was scary.

As for a period of time, I can't say for sure -- you'd have to do some research on kidney transplants to find out. I know she started doing IP dialysis before her kidney was officially classed as "rejected."

Although, another approach you might want to take is your character's immune system. Just having a transplanted organ at all, even one that is functioning just fine, means the patient must be on serious, serious meds to suppress her immune system. Otherwise, her own body would attack the foreign organ, no matter how close a match they were. (Possibly a donated organ from an identical twin wouldn't cause this problem -- I don't know.) So maybe just having her away from a source of medication for a week or two could be enough to put her into a serious state of health.

backslashbaby
05-10-2010, 08:30 PM
Okay, I'm intrigued. Questions:

(#1) From the little bits I read, it seems my character would have to have been born with this, as she is 23 and the disease apparently can take quite a few years to become apparent. When I googled it, I also read that B12 pills were a common form of treatment. Are there any circumstances under which it would be realistic for my character to be prescribed pills as treatment before shots?

It depends on the doc. I have to have shots because I really, really can't digest it. But with all the studies about sublingual tablets or megadose pills, I could see a doc trying that first. Particularly if the patient doesn't like needles. It's a big ole needle to get deep in the hip!


(#2) If not, who administers these shots? The patient, or the doctor? And does the treatment always start out daily? I also read that there is a weekly and then monthly shot treatment...

To help the symptoms at first, you get a shot weekly for a month or so, usually. Later, you go to 3-4 weeks. The doc has to give the shots originally. I've been Dx'ed so long that I do mine at home because I can twist around and do a hip shot easily. They taught my Ex how to give me mine for a long while.

(#3) Assuming she just discovers that she has this in her early 20s...is it realistic that she wouldn't do the treatment right from the beginning? My story takes place over the course of about a month. Ideally, she would find out that she has this and *not* take any form of treatment, but I am worried that it would have to be a dramatic event, symptoms-wise, that would lead to the discovery of the disease in the first place.

She could just feel like crap [tired!] and usually have at least tingling in the feet and hands. She'd lose her balance in the dark or with her eyes closed. I had jaundice that I noticed. I lost a ton of weight and was never hungry (eating was a chore), but you don't have to have that.

So the symptoms can seem odd more than very dramatic. The symptoms develop differently for different people, so it's realistic to go with 'odd' or 'I think I'm dying [mine, eventually!]'.



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