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docholiday06

New member
hi my name is young, im 18 years old and i am in pathophisiology class and we have a project thats just passed to us and we had to pick a disorder and present it on a poster board to the class about what we learned and what not and i figured what better info i could get was from all of the people with it....

okay well this is how i am going to be graded on and i guess everyone can just like tell me what they think/experience or the info they learned while being diagnosed with (CF) and i'll just gather all of the info together...

epidemiology - (how does it present, transmission, population affected, prevalence, complications.)

pathology - (disease/disorder process, mechanism of action, normal vs abnormal)

pictures - (i guess i need pictures of this disease/disorder)
(if i could get pictures it would be great, you dont have to give them to me...)

Patient story - (what happend and how they have dealt with the disease/disorder)
(i will only use stories that you guys allow me to use if you dont i wont use them)


i hope everyone is okay with me posting this messege in here even though i dont have it i just wanted to do this project b/c my gf's brothers ex gf died of this and i want to know from her family and all of the people that have this around the world.
so please help me....

thank you and god bless you all
 
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docholiday06

New member
if you would like to contact me and help me please feel free to send me an email...
my email is youngster06@gmail.com



-young-


P.S thank you to everyone
 
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anonymous

New member
I'm at school right now, so I can't help much this instant. I just wanted to let you know I won't leave you hanging. Haha. After class today, I'll come back on and help with what I can. As for pictures of the disease, CF is more internal than anything. But I have pictures of surgical scars, and a medical device I had implanted called a port, and I'll be happy to link you to those if you like. As I said, I'll return here after class later.
-Emily (Emily65Roses, at school, not signed in)
 
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docholiday06

New member
hey thank you im at school too... i wont get back on the net till around 3:30 central time in us... i'll talk to you people later... bye thanks for the help emily
 
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Mockingbird

New member
When you say you need pictures, do you mean pictures of people, or pictures of, um, CF chromosomes? Or can you use pictures of the secondary infections we can get, like psudemonis or cepacia?

Also, what do the terms "mechanism of action" and "Normal vs Abnormal" mean?

Anyway, i'm sure you know the basics, so my own story, I was showing symptoms or pancreatic insufficiency and congested lungs from birth, but I was not diagnosed until 4 weeks old. I was underweight and short for my age until I reached about thirteen, then the doctors threatened to put a stomach tube into me unless I started gaining some weight. I really didn't want that, so I resolved to eat more, but I really didn't start gaining weight until I had a clean-out (one to two week period of IV antibiotics for the lungs). In CF, Lung function and weight gain tend to go hand-in-hand. By 14, I was up to an average weight, and I've been able to keep it ever since.

I have also developed other symptoms over the years related to my CF; around age 12 I had my first nasal polyp surgery, and another around age 17. At 14, I developed acid reflux, which I now treat using a proton-pump inhibitor. Around age 19 I entered a period of mild depression and I was prescribed zoloft at age 21. At age 23, however, I was able to stop taking the zoloft without any problems. Also around age 19, I developed "distal intestinal obstruction syndrome" which is pretty much cronic constipation. =-) also, somewhere along the line I recieved a psudemonis infection as well as a staph infection, both of which have developed resistances to antibiotics.

Hope that helps. I don't remember what exact mutations I have; I never bothered to remember them, but perhaps other people have, and you can include that info to show off to your professor, or something. Good luck.
 
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Emily65Roses

New member
Okay I'm home, let's see what I can do for you. I will attach links to pictures of me at the end that you may use.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>docholiday06</b></i>
epidemiology - (how does it present, transmission, population affected, prevalence, complications.)</end quote></div>
Mine presented, at birth, with meconium ileus. It's basically an intestinal blockage of the newborn's first bowel movement. Mine had to be surgically removed at two days of age. Transmission is only from parents. CF is genetic and cannot be passed on any way but through parents, through genes. You need one recessive CF mutated gene from each parent in order to have CF (for a total of two). If you only have one CF gene, you are a carrier of CF and have no symptoms whatsoever. Population affected is roughly 30,000 Americans. Complications is a tough one, there are about a thousand of them. I'll just go with the easiest way to answer this and provide things CFers are prone to because of the CF: depression, acid reflux disease, osteoporosis, arthritis, CF related diabetes (CFRD), liver problems, sinus problems. That's just the list off the top of my head, I guarantee I'm forgetting some. There are a LOT of complications.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>docholiday06</b></i>pathology - (disease/disorder process, mechanism of action, normal vs abnormal)</end quote></div>
Process is you're born with CF, you live with CF, and in almost all cases, you die of CF. Hah. Not helpful, I know. CF is a progressive disease. In short general terms, this means that you're born in as good condition as you'll ever be, and get worse over time. It can be a pretty slow process, but it's also been known to be a quick one. Each CF case is different, so it's impossible to give one general "over all" process. Mechanism or action and normal vs. abnormal I can't help you with until you clarify what you mean.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>docholiday06</b></i>Patient story - (what happend and how they have dealt with the disease/disorder) (i will only use stories that you guys allow me to use if you dont i wont use them)</end quote></div>

Anything I post here, you may use. I don't care. Just be sure to quote me when necessary. Okay, so for my story, let's see. I was born in 1984, diagnosed at two days old due to the meconium ileus. I had nasal polyps removed when I was 5. I had my first round of IV antibiotics when I was 16 due to a bacteria called MRSA (basically a resistant form of staph) growing in my lungs. Since then I've gone on IVs about twice a year. I had a port placed (that's in the pictures), because with IVs happening as frequently as they do, my arm veins quickly got rather over-used. A port is a semi-permanent (they need to be replaced every few years, depending on infection, usage, blood clots, etc) solution to regular arm IVs. I've had mine for 4 years, and it's still going strong. I am currently 22 years old, with (as of my CF clinic appointment on Monday), 73% of my lung function left. They start evaluation for a lung transplant when you get to and stay at, about 30%. So I'm still doing pretty well.

I'm on quite an impressive list of medications / therapies (course, I'm not special, we're almost all on an impressive list) and would be willing to provide you with that (as well as descriptions of what the drugs are for, what they do), if it'll help. Just let me know. Anything else I will be happy to include, you just have to tell me what I left out / what else you need.

<a target=_blank class=ftalternatingbarlinklarge href="http://shw.fotopages.com/7690556/Front-View.html">Front View</a> (The scar on the left of my stomach in the photo is from the meconium ileus surgery I had when I was 2 days old).

<a target=_blank class=ftalternatingbarlinklarge href="http://shw.fotopages.com/7690557/Side-View.html">Side View</a>

For reference, this is what a <a target=_blank class=ftalternatingbarlinklarge href="http://www.snwlk.nl/images/DSC00002.JPG">port</a> looks like, just the hardware. The needle next to it is the special needle we use to get access to the port when it's needed (If you'll notice in my pictures, there's nothing out of my body, and no way to connect any meds to the port. That's because there's currently no needle in it. You need to stick the thin needle through the 1/4 inch of flesh or so on top of the port and into the hard gel at the top of it to gain access to the IV line.)
 
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