prison life/ marfan syndrome

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vtwordweaver

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Hello, I am looking for people with knowledge of two different things. Both will portrayed in the novel I am working on. One of the main characters is going to prison. He is kind of a wimp and I want to be realistic about what happens to him.

Also, his daughter has something called Marfan's Syndrome. I have done some research on this, but would love input from someone with experience.

Thank you
 

smallthunder

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Marfan's Syndrome

If I recall correctly, my beloved mentor had this condition -- and it is what led to his early death.

You're talking about the "Abe Lincoln" syndrome, no? yes?
 

Tish Davidson

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[size=-1]The National Marfan Foundation has a section on living with Marfan that might be helpful for day to day ideas about the life your character may experience.
www.marfan.org/ [/size]
 

vtwordweaver

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Abe Lincoln

smallthunder said:
If I recall correctly, my beloved mentor had this condition -- and it is what led to his early death.

You're talking about the "Abe Lincoln" syndrome, no? yes?

smallthunder, there has been much debate about this. From what I understand, no one knows for sure. They would have to run a DNA test. I know there are some athletes who have died from this (I don't know their names though).
 

vtwordweaver

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BradyH1861 said:
VT,

Where is your novel set? And are you talking state or federal prison? Let me know and I can probably recommend something.

Brady H.
Brady,
I am not sure yet. The setting will be in New England since I am the most familiar with it. It's a made up city; it only exists in my head! Since he was caught trafficking cocaine, I am sure he will go to federal prison. That means he will be sent out of state which adds to the novel
 

smallthunder

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Marfan & my mentor

vtwordweaver said:
smallthunder, there has been much debate about this. From what I understand, no one knows for sure. They would have to run a DNA test.

Yes, I remember now the controversy regarding Lincoln. In any case, I'm sure now that we're talking about the same condition that killed my mentor.

Would you like me to contact his wife and see if she would be willing to answer your questions/discuss the matter with you via e-mail (she's in Taiwan right now, like me)?
 

vtwordweaver

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smallthunder, sorry that I didn't see your post until just now. (Been taking care of my SO who has a kidney stone). I would love to "talk" with anyone who has witnessed Marfan's first hand. I want to make it as real as possible, especially since the character is a child.

So, yes I would love to "talk" with your friend's wife.

Thanks,

wordeaver
 

earlybird1

Marfan's Syndrome Info

I dated a man with Marfan's syndrome. Some of the physical characteristics are that the person is very tall, thin, with especially long legs and arms. Fingers may be long and thin. This guy was 6'8". He told me that people with Marfan's syndrome do not live long lives. I think it's because of the strain on the heart. Once when we were traveling on vacation, I had been looking forward to hiking in a particular national forest. When we got to the trailhead, he admitted he could not climb very far because his legs and heart would not allow it. It was true. We hiked for only a few minutes on a slight slope and he was not able to go further. He was about 38 at the time.

I recall his saying that Marfan's is hereditary, and that his family believed his maternal grandfather also had the syndrome. His brother did not inherit the trait.

Hope this helps in your research.
 

vtwordweaver

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earlybird,
Thanks for the info. This is the kind of stuff that I am looking for, the daily life. This little girl also has to deal with all the problems of being a tall kid. She's not allowed to take PE.

Did this man that you dated look any differently from the average person, other than being tall? What were hid facial features like?

Thanks,

wordweaver
 

smallthunder

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earlybird1 said:
He told me that people with Marfan's syndrome do not live long lives. I think it's because of the strain on the heart.

I'll get in touch with my mentor's widow and ask if she would be willing to discuss the matter with you -- in the meantime, I can 'second' what earlybird wrote.

My mentor (John) never had children because he and his wife never knew how much time he would have on earth ... which is too bad, since he would've made a fabulous father.

In terms of appearances, John looked like the proverbial "long drink of water." Tall and then, and loosely jointed (if you can picture that). He did not look peculiar, really. He had salt & pepper hair and beard, and with his long face and limbs, reminded me of a gentle Afghan (dog).

It's not the heart, per se, that's the problem -- if I remember correctly, it's the arteries in the neck connecting to the heart. I remember John had to spend some days hooked up to a piece of medical diagnostic equipment attached to his belt -- checking his blood flow in this neck? -- but that didn't slow him down.

He also suffered from wicked migraines -- had to give himself injections for the pain when they struck -- but I can't be sure they were related to Marfan's Syndrome.
 

Maryn

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Our son has been tested by his pediatrician and by specialists multiple times for Marfan's. Although he turned out to have many of the indicators but not the syndrome itself, I did a fair amount of research on it. (Couldn't help it--moms worry!) I didn't keep my notes on a computer, so I can't just shoot them to you, but here's what I remember:

Marfan's is inherited, although no one in my husbands or my family has any signs or symptoms or meets any of the physical criteria. (That didn't rule it out for us.) The physical traits associated with it include not only uncommon height but long arms--with the fingertip-to-fingertip reach greater than the person's height. Scoliosis (spinal curvature) is common. Hands and feet may be large, even for a tall person, and there may be some 'bugging' of the eyes. Marfan's people have loose joints and may be able to do things like pop their shoulder out of its socket painlessly, or wrap a leg behind their head (which our son could do, although his muscle flexibility was merely normal). They tend to have long narrow faces, and something about the shape of the roof of the mouth causes teeth crowding. Actor Vincent Schiavelli's appearance is typical--nothing freakish, but the complete set of indicators are all present.

Risks are many and serious. Any or all of the cardiovascular system may be weak, from mitral valve prolapse (a heart murmur) to heart enlargement and the potential for aortic rupture, which is what occasionally kills basketball or volleyball players who didn't know they had Marfan's. The lungs may be involved, with high incidence of bronchitis, asthma, and emphysema. By the time a person is entering puberty, there may already be ocular (eye) involvement. I don't remember what the risk was (lens detachment?) but needing new glasses more than once a year was an indicator.

Early diagnosis is important, since lifestyle changes (i.e., no contact sports) and/or surgery may be needed to prevent early death. Most of the doctors made a point of telling us that with proper lifelong care, Marfan's patients live normal lifespans in good health.

[Now a college student, our son is 6'3" with a spinal curvature that probably robs him of about 2". (I'm 5'5" and his dad's 5'10", both of us the tallest of our gender in the family.) He has 'toothpick feet', very long and narrow, and slender hands with very long fingers which might have served him well if he'd played keyboards. His arm length exceeds his height by about 3 inches, and he's worn glasses, with frequent lens changes from middle school until about the middle of high school. He does not have Marfan's.]

Maryn, grateful
 

Lauri B

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Another characteristic of Marfan's is that your skin is quite loose--you can pull it up off your body quite easily. My nephew has it and I have markers for it, but neither of us looks very different than anyone else.
 

vtwordweaver

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Thanks

Maryn, Thanks so much for the info. How tall was your son when he was ten? The girl that I am writing about is ten. Every one assumes, including her mother, that she inherited the Marfan's from her father because he is tall. However, I believe she is really going to have inherited from her deceased grandmother on her mother's side. The girl does have the buggy eyes and the overcrowded jaw.
Thanks
 

Maryn

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On his 10th birthday, our son stood 5'1". I remember that he was always at the top (and sometimes over the top, clean off the page) of the pediatrician's growth charts, for height, and average for weight.

Maryn
 
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WritingFool

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Now different factors are going to dictate the type of experience your character is going to have in prison.
What type of prison, minimum, maximum security, would be determined by the type of crime. The person's ethnicity is another. What type of cell mate would he be paired with. It all depends on how realistic you want it to be.
Theres a gold mine of opportunities for you to set up your character into different scenarios, there.
So lets start with those basics.
Post here or Message me, and Ill help how I can.
 

Demonica

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Maryn said:
Risks are many and serious. Any or all of the cardiovascular system may be weak, from mitral valve prolapse (a heart murmur) to heart enlargement and the potential for aortic rupture, which is what occasionally kills basketball or volleyball players who didn't know they had Marfan's.

.......

Early diagnosis is important, since lifestyle changes (i.e., no contact sports) and/or surgery may be needed to prevent early death. Most of the doctors made a point of telling us that with proper lifelong care, Marfan's patients live normal lifespans in good health.

My sister is doing research on the elastic properties of the aorta - I visited her lab recently and got a layman's explanation. Marfan's causes a protein in tissue not to align correctly. The healthy aorta cross-section looked like that fabric that has been crumple-pleated, giving it the ability to expand and contract, stiffened by these long strands. The cross-sections of those with Marfans had areas where the strengthening fibers were missing or randomized. The condition becomes dangerous as the aorta expands under pressure but can't fully return to its original condition. To use another fabric metaphor, have you ever had a piece of clothing with lycra in it where the lycra started to disintegrate and the clothing got all baggy there?

The purpose of the research is to predict when surgical intervention is necessary - i.e., when the aorta has expanded but not contracted - it starts to show a bulge - detecting the critical point is key to avoid one of those catastrophic aortal ruptures, Not every person with Marfans will need the surgical intervention.
 

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If you still need more information, my son has it. He is 22 now, but we didn't know he even had it until his last year of high school. I didn't even know what it was. One night, he showed me his back and when I looked, I was horrified. It looked like someone had taken a whip and lashed him about twenty times. I took him to the doctor and they didn't even know what it was. When we finally went to a specialist who did several tests on him, they confirmed he had Marfans. You are looking for information on what a ten-year-old child with it would look like? I didn't even know he had it back then, but he was a quiet child and hated sports with a passion. He didn't have much energy but I just thought that was his personality and/or energy level. He took a huge growth spurt when he was about sixteen of about a foot in height. He's over six feet now. His joints move weird...he does this thing like wrapping his arms over his head...something like that. His fingers and feet are long. I'm trying to think. Anyway, if you need anymore information, please feel free to ask.

Dorothy
 

vtwordweaver

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prison life

WritingFool,
He is a wimp! He thought that he could make a little money selling cocaine (he is not a drug user, the ironic thing is that he owns a fitness club). That would mean he is convicted of a felony, which I assume means maximum security. He is white and despite the fact that his parents died when he was 20, he has led a fairly sheltered life. He is going to have an extremly rough time in prison.
 

vtwordweaver

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Marfan's

Demonica and thewriterslife,
Thanks for the info. I am taking every bit if info I get and digesting it. The little girl has a rather serious case of the illness and with her father in prison, it won't be monitored as well as it should.
I like getting all the little details like "wrapping his arms over his head."
Thanks,

vtwordweaver
 

Rabe

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vtwordweaver said:
WritingFool,
He is a wimp! He thought that he could make a little money selling cocaine (he is not a drug user, the ironic thing is that he owns a fitness club). That would mean he is convicted of a felony, which I assume means maximum security. He is white and despite the fact that his parents died when he was 20, he has led a fairly sheltered life. He is going to have an extremly rough time in prison.

Okay, this is extremely annoying as I just typed a lengthy reply to your questions/needs regarding prison life and it was lost due to the server saying I wasn't 'logged in'. Very annoying.

I'm not sure I'm going to be able to recreate all of it in the time I have allotted for the evening.

Let me try to hit on a couple points though.

First, you said that you believed your character would be going to a federal prison. That's a dubious claim based on what you've already posted about his backstory. But there needs to be a clarification here. You said in one post that he was 'trafficking' in cocaine and in the post above it sounds more like simple possession with intent to sale. Otherwise selling cocaine out of his business. That is something that would need to be resolved as they are not the same thing.

But, presuming it's 'trafficking' rather than possession, it's still unlikely he'll go to a federal prison unless he's involved in major trafficking, such as bringing in plane or boatloads of the stuff. If he's interdicted by the DEA then it would make more sense. Otherwise the feds would most likely let the state handle it, which means he goes to a state facility. so it would remain likely he'd stay within the state. There is the possibility, however, that he could go out of state if the state he was convicted in has an interstate compact agreement to 'house' inmates in another state's facility OR he's sent to privately contracted prison where they send him to one of their facilities in another state.

In order to go to federal prison, he needs to be convicted in a federal court on federal crimes (such as bank robbery, always a federal crime). Federal crimes normally are those that cross state lines or involve federal institutions (such as movie piracy, trafficking, kidnapping across state lines, mail fraud, blah blah blah). Without knowing for sure if you intend for him to be convicted of a federal narcotics charge - major trafficking - or just simple sales, then I'm still leaning towards a state court and a state facility.

Just by being convicted of a felony does not mean he goes to federal court, nor does it mean he goes to maximum security either. He could go to maximum depending on other factors, such as a conviction or history of violence (seems unlikely from what you've already posted) or many, many counts of the same felony. Again, seems unlikely. Most likely he'd go to a minimum security facility or even an honor camp. Again, depending mostly on the elements of the crime and violence used. There's also the possibility of diversional programs such as regimental discipline (otherwise known as 'bootcamps') or even probation.

Does he have a good lawyer? A good lawyer could work with the DA to get the charge reduced in felony category and that could even land him time in a county lockup (much different than prison) or even probation. These are factors that need to be determined.

As for what prison is going to be like? That varies. First, I'm going to presume that as a successful business owner he would be able to bail out so he's not spending a lot of his time in the pre-sentence detention facility (such as a jail) while waiting trial. In my area - Nevada - sales of a controlled substance ranges from a $50,000 to a $100,000 bondable bail. I'm sure that as a first time offender, local business owner and no history of criminal activity in the past there should be no reason he's denied bail. Now, mind you, that's per count so it could go higher.

Going to prison without spending significant time in a pre-sentence dentention facility would be worse than spending time in a pre-sentence facility. At least in the pre-sentence facility (where he could be sitting for a month to more than a year, depending on the variables of his case) he would have a chance to start to get accustomed to regimented life. Without spending that time, it'll be tougher. Going to prison means he's a convicted criminal. He gets treated like one. Guards are less likely to be sympathetic (and, let's be honest, they don't normally get the cream of the crop as prison correctional officers...I could tell stories - but I won't! Suffice to say, Scott Savol from 'American Idol' was once a correctional officer - nuff said about that). The cells are small, cramped and could be overcrowded...a cell built for two or four may have three or six. Dorm styles could be even worse as a place built to hold twelve may have eight on cots.

Other inmates will pretend to be friendly with him in order to get him to owe them 'favors'. Some he can pay off with money, others not so much. If he's niave, he's going to fall into those traps. Some 'favors' might be that another inmate will take care of his cleaning. When the favors come due, it could get nasty for him. There's also the very real possibility that he'll be approached by the Aryan Brotherhood or other white gang in prison. They'll offer him 'protection' or browbeat him into joining their gang. That automatically gives him problems with other gangs - especially other ethnicity gangs such as La Raza and the Black Muslims. (there are many others out there, including native american gangs, fractional oriental gangs, splinters of ethnicity gangs especially in the top three - white, black, hispanic, etc.)

No, going to prison won't be easy for him, nor should it be. There's a lot to be considered (and my lost post was much lengthier than this one, but I don't have the time to recreate it).

But, I think I've given you a lot to think about, especially the backstory of your character. I will pose one further question for you though:

If your character owns a fitness center why is he selling cocaine? Wouldn't steroids be a better choice considering his clientele?

Feel free to contact me if you want more information, I'll try to help you out to the best of my experience:

Rabe....
...and congratulations Vtwordweaver...your's is the first post to knock me out of my lurker status after a couple weeks on the boards. Don't worry, I won't remind people of that in the future!
 
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