To the person who posted last, I'm glad that you took steps to inform yourself. That's a wonderful thing, and I appreciate your comments. If your research hasn't told you yet, CF is the NUMBER ONE genetic "killer" of children and young adults. It is the most common caucasion genetic defect (although it exists in all races) and something like one in twenty caucasions are carriers of the gene. We tend to get so frusturated because the disease is MUCH more common than anybody thinks and nobody seems to be very well informed about it.Also, "symptoms" are very individualized and just because a person does not show symptoms does not mean that their body does not need matainence. You might not have noticed, but Frankie's fingers are rounded at the tips. This is called clubbing and means that there is chronic lung infection. Did you notice how round her rib cage is? It's called a barrel chest and is also a sign of lung problems. We have to take medicine every day, and do lung therapy every day just to keep our selves "normal". We don't just take meds when we're sick.Please continue to chat with us!Debbie22 yr old w/ CF
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Comments on Real World cast memeber.
- Thread starter beaudry93
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(this is the person who you responded to)Thank you for the additional, personal knowledge about this subject! Even though I did research on the topic, I didn't know about any of those physical signs you mentioned.It seems that a good place to educate people about common diseases would be in school health classes. Not only should the medical details be described, but also details of what it is like to have to live with such diseases.In what ways are people trying to get the public more informed about CF?Kelly24 non-cf
As AbsintheSorrow said several posts back...."there is no such thing as bad publicity". Anything that makes people go "what the hell is CF?" and makes them search the internet or library for more information, can't be bad!! Before Emily was born, we had no idea what CF was either, and over the years have learned more than we ever really wanted to know. Knowledge is going to be one of the keys to better maintenance of this disease and eventually a cure. The more public awareness the better!<img src="i/expressions/rose.gif" border="0">
To some extent i can relate to where she( Frankie) is coming from, because when i was younger i wouldnt have even known i had cf if noone would have told me. I had no lung involvement till i was in my 20's. I was around smokers and it never bothered me at all. In fact I used to sing in a band ( when was 22) in a smoke filled club and didnt have too many problems with it. NOW would be a TOTALLY different story. I am older and my cf has advanced a bit and I also have b.cepacia now, and i have to avoid smoke of ANY kind ( and anything with a strong smell to it, like perfume, room sprays, stuff like that). I once was a LOT like Frankie doing the stupid things she is doing, because when it hasnt hit you yet (how bad cf can be) you just dont realize how important it is to prevent the damage you are doing to yourself. She WILL regret the smoking thing if her lungs ever get bad, or if she ever gets a bad lung infection that cant be gotten rid of and wreaks havoc on her life. But right now she feels the way a lot of people with cf that have no bad repercussions uually do. That it wont happen to them. I pray that it never does........ Diane 39 / cf / diabetes / b. cepacia
To some extent i can relate to where she( Frankie) is coming from, because when i was younger i wouldnt have even known i had cf if noone would have told me. I had no lung involvement till i was in my 20's. I was around smokers and it never bothered me at all. In fact I used to sing in a band ( when was 22) in a smoke filled club and didnt have too many problems with it. NOW would be a TOTALLY different story. I am older and my cf has advanced a bit and I also have b.cepacia now, and i have to avoid smoke of ANY kind ( and anything with a strong smell to it, like perfume, room sprays, stuff like that). I once was a LOT like Frankie doing the stupid things she is doing, because when it hasnt hit you yet (how bad cf can be) you just dont realize how important it is to prevent the damage you are doing to yourself. She WILL regret the smoking thing if her lungs ever get bad, or if she ever gets a bad lung infection that cant be gotten rid of and wreaks havoc on her life. But right now she feels the way a lot of people with cf that have no bad repercussions uually do. That it wont happen to them. I pray that it never does........ Diane 39 / cf / diabetes / b. cepacia
Randomly browsing these entries... I wanted to make a few comments..... I'm 25/F, no CF, medical profession.......... anyways.....<UL>These "normal" people discussing CF on the Mtv message boards are <i>normally</i> anywhere from 14-18 years old.... so give them a break.... </UL><UL>I found it shocking that the roomies didn't know what CF, them being a bit older, maybe more educated, but then I guess, the only reason I know of it, is because as a teenager I volunteered at a long-term care hospital and spent alot of time visiting with a man with CF who eventually died at age 24.... (well other than my medical background)</UL><UL> So what Frankie smokes..... not everyone wants to heal.... its her choice. </UL>
I'm a 24yr woman with CF . I was dignoised at bith also,& haven't known any other type of living.I have always tried to live life like there wasn't going to be another tomorrow. I think everyone has their limits & thats all that should matter.The first time I saw the real world,I picked it up near the end of the show & didn't hear "Frankie" say she had CF,but then I saw her climb up the stairs,cough,then caught a glimpes of her nails I knew. I was also curious to see if we would see her doing all her meds etc.To be honest I haven't even heard her cough.For someone with CF who smokes not to cough & looks like they are in good health,seems to have some idea on whats "okay for HERSELF". I am glad to see that CF has been brought to a public arena where cf teens can see someone they can realte to. Just b/c "Frankie" has cf isn't going to change the other bad influances the real world has to show.All the show does is promotes ,sex, drinking,smoking etc, & thats okay.You have to realize what you're watching. When I was growing up I never let anyone know how bad CF was,half of my friends thought I had asthma.I don't think the world needs to know your weakness's & something personal like this is putting your heart on your shelve.-Christine
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My only problem with the real world is how Frankie act on it. She portrays CF as a not so serious disease, and then Oh My God, when it pleases her or when she wants to get out of something she's got this horrible disease and she can't do anywork, and she doesn't feel good etc... That just pissed me off. The thing is she is doing it to herself, by drinking and smoking, and cutting. I realize it's her life, but if she's going to be doing stuff that is harmful to her body, and she knows it, shut the heck up and stop complaining... God it's not like she has it bad either. Try talking to somebody's whose had it worse than her, or somebody who's had a lung transplant, and has actually been told that they WILL die if they don't get it, not that they will die some time in the distant future. Cause face it, everybody dies, but she has time it's not like she's gonna drop dead at the very second she has to do hard work. ~Disgusted...
AbsintheSorrow
New member
Yes everybody dies. But knowing you'll die early does change your life. Yes she does destructive things, and sometimes uses it to her benefit, but you have to remember there's a lot more video shot than they show. They edit it to make it look as they please. And just because she does destructive things does not mean she doesn't deserve credit. I used to cut myself (it's only been a few months, but I want to stop), does that make me less deservant of credit? Just because people sometimes do stupid things does not make them less important. Not to mention that no matter who you are, and what you're doing, SOMEONE ALWAYS HAS IT WORSE. So yes someone has it worse than her, but you know what? Someone also has it worse than you. Someone has it worse than me. There is always someone worse off, no matter what. Not to mention problems are relative from one person to another. The way one person reacts to a problem will be different than the way a second person reacts to the same problem. Some people have a harder time coping. So don't judge her, based on half an hour a week of footage, when they shoot almost 24-7. What basis do you think you have on which to judge her? You don't even know her. If you're able to live, and cope with it, without making a big deal out of it, then good for you. But just because she has a harder time, doesn't mean you should beat her down for it.
Hi my name is Shannon,Back in high school I did a report on Cystic Fibrosis and was very interested in learning more about it. I send my prayers out to all of you with Cystic Fibrosis or have family member with it. I was just talking to my cousin today who has a friend who's 9 year old son has cystic fibrosis and is not doing well at all he is at his final stage. It makes me so sad because he is so young and so much more life to live. Again my prayers go out to all of you also I would like to have some more information if anyone can please e-mail me some more information that would be great my e-mail is BabyGirl_Lyric@hotmail.com. Now my opinion on Frankie I think that she seems like a really great person very sweet but I think she is really unhappy with life and that is why she is not taking good care of herself. But Im not trying to make any judgements on her she does seem like a sweet girl and I wish her nothing but the best.
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I'm not saying that Frankie doesn't deserve pity, or that she hasn't been having a hard time of it but from the perspective that they show it on tv, the only thing she seems to do is complain about her CF when she has to do hard work, not when she does something equally taxing at home, Just when she DOESN'T want to do it, and that ticks me off. She's using her CF as an excuse. Yes, it is bad. But alot of the problems she has is of her own making, like with her boyfriend. Her CF didn't cause that, she did. Now she's complaining that she has it too hard, it's so hard, but some of that was her fault not CF. YES, we get that! Life is hard. Stop blaming the CF for everything that goes wrong with her life. I'm saying that it seems as if she's making excuses for things she doesn't want to do. I know, I did that for a period of time where I just didn't care, my thoughts were then, what's the point... I just wish she'd start taking some responsibility for the problems she's created, and leave any and all blame behind.
AbsintheSorrow
New member
That part I agree with. The one point I wanted to make was that they film a whole mess of stuff, and only show what they want. But she does seem to suddenly be sicker when it comes to her job. And for the love of god do I ever agree with you on the problems with her boyfriend. She thinks, for some reason, that drunken mistakes should be forgiven. Maybe one, once ever. But certainly not the way she does it. She cheats with the loud mouth (Brad?) the very first night... and then ends up allll over Adam, and then she gets all upset. What is that? If she actually loved Dave, she could avoid sitting in Adam's lap with her lips all over his face. I know attraction can be a bitch, but it's not that hard if you actually love who you're with.
I was really upset last night watching the show. MTV made a huge deal of her cutting herself and they never once mentioned her disease. I understand that cutting is a big deal but so is CF. How many times have you seen shows addressing CF? I have only seen one, it was a special documentary on the Discovery Health Channel. I have seen numerous shows addressing cutting (including Oprah and Montel ). I am just disappointed in MTV for not putting any emphasis on the disease that affects so many people and is so important. I just hope that they realize what a great chance they have of bringing attention to this disease.Amanda24 yrs without CF,with boyfriend 33 yrs with CF
I was too Amanda. Thougth the exact same thing you did. yes cutting is serious, but so is cf. Not to mention self mutalation is in CF patients as well. I did go to the MTV board and read an interview with Frankie and she did mention that she is jsut now finding out that self mutalation is known in cf patients-so that got some "awareness". But still. Depression is in the majority of people with CF, and depression can cause cutting because people don't know any other way of dealing with stress and emotional pain. OH but MTV must be right because they are a money making station. Lets face it they know the MTV generation well, only regular people who are depressed cut, not depressed people with an illness because thats just to many problems for one person. (note sarcasim). Anyway i am with you Amanda. I wish MTV would do something about the CF thing, like a documentary, I know they do those they did plenty on drug dealing and aids. I seriously doubt they will because its not a "ratings getter". UGH.Disgusted as wellAmanda 21 with CF
AbsintheSorrow
New member
I agree here with the last two posts. MTV is being irresponsible. I'm sure Frankie mentioned more of the CF in the many hours they taped, but they choose to show what they want. I think part of why they focused more on cutting than on the CF is because it's a problem more people can relate to. But I do agree. They could talk about both, one in relation to the other. I started cutting when I was 15, and I'm still doing it on and off now (though trying so hard to STOP IT!). So they should give cutting some "air-time," because it is important. But they should be giving CF more "air-time" to get some awareness out there.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>I took one look at her fingers and knew. i have a few thoughts, first I'm so glad that there is finally someone in the public eye w/ CF. Although it's so common, so few people actually know about it. Second, I'm upset that this person in the public eye smokes. It is her choice and I don't think she has any responsability to be a "poster child", but I think the producers at MTV should have used more discression and thought about how this was CF's first impression for most people. Debbie22 yr old w/ CF<hr></blockquote>I am curious. I don't know much about CF, but am wondering how you knew Frankie had it by looking at her fingers.
AbsintheSorrow
New member
In CF patients, fingers and toes are clubbed. That is to say, they look kind of like spoons. Rounder, and flat. CFers and CF families can usually see clubbed fingers and toes immediately in a CFer. Also, the bridge of her nose is pretty flat, and I noticed that right away too. I don't know why, but the nose-bridge in CFers is often flat.
Thank you for your response. I cannot understand how so many people have never heard of CF. I don't know a lot about it, but I can't think of a time when I hadn't heard of it. A neighbor of mine has CF, and is almost 40, if not older. He was doing very badly, and the family took their two adopted daughters out of school and had a long family vacation at disney world. Then a miracle happened. He received a lung transplant, and it seems he got a new lease on life. He partakes in activities, and doesn't even need to take his oxygen tank around anymore. I wonder if this is an unusual situation, because from what I understand, he is very old for having CF.
No Frankie didn't die. It would have been on the news and on MTV if she had. Its just another Real World rumor that floats around.I have to say I saw the last episode when Frankie leaves the show. I saw her mother smoking around Frankie. Now correct me if I'm wrong but wouldn't most parents stop smoking when they find out their kids has a respritory illness, or at the vary least try to smoke where the kids aren;t around. I get the feeling taht her mom smoked in the house. So Frankie's smoking could be a result of her mom doing so. Studies have shown that kids with parents who are smokers have a high chance of being a smoker themselves, same with alcohol. Its kinda a genetic thing where you get the addicted gene, get addicted easier to something. I have also heard this, and its happened to my cousin so I believe it could be true. That if the parents smoke in the house you get addicted to the second hand smoke, nicotine what have you. My cousin said she never smoked while living with her parents, granted her parents both smoked like chimmneys and in the house. SHe said when she left to go to college she had the strongest cravings for ciggerettes, she couldn't understand why because she never smoked. At first she thought she was homesick and the cig smoke was a reminder of home but she found out she had grown an addiction through the second hand smoking. Weird huh. She has tried to quit so many times but its really hard for her. She said its almost like she has smoked all her life because of her parents, plus she has that "easy to be addicted to something" gene. Point to all my rambling?? Nothing really just pointing out some stuff. Frankie could have been already addicted to cigs if she was around her mom alot when she smoked who knows. But she still had the choice to say yes or no to actually putting one in her mouth i know. I jsut felt like talking really. Who knows whats going on. But I did see an actual post from frankie her self saying she quit smoking. How true it is I dunno. The post was on mtv.com. Its an old post I saw a long time ago when the show first aired.OK I'll stop typing now