<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
q]
Jennifer,
I sort of agree with you, but also think its the medical community's responsibility to provide proper training (especially to an M.D. that deals with bone and joint conditions as many cfp will someday develop such conditions). I am mostly upset with those who TRAIN these doctors and CNA's and nurses, etc.
I also think if you don't know what something is, DO NOT pretend to me like you do... for example, when I asked the CNA if he knew what cystic fibrosis was, he said, "oh yes, absolutely..." and then went on to make the comment that I should understand how a MS patient should feel. I realize he probably has little or no knowledge of CF, but at least do not assume everything with an accronym is a muscular disorder.
Also, the facial surgeon also said he "knew" what cystic fibrosis was and proceeded to tell me how he thought only males could get it. At this point, I was able to educate him, but at the same time I was let down that a prestigious school for medicine had not better trained him.
CF is no longer that rare as many of us are living far longer lives and the medical community is having to "deal" with many more of us having "normal" people complications. I think the medical community has a responsibility to better educate people that they may be dealing with CF and its complications (or other complications that come about from having CF) since so many of us ARE getting older and WILL deal with the "outside" medical community at many stages in our lives. For example, docs all seem to know what diabetes is since it is a controllabe (in most cases) disease that most docs will eventually have a patient with it. Well, for things such as CF, why can't we make THAT commonplace in U.S. medicine? Why is it my responsibility to educate nearly every doctor that I see who is NOT a CF specialist on my condition? Does a diabetic have to go in and explain thier condition to everyone who is not an endo. doc? I doubt it.
I just wish it were getting better as we are living longer and that the medical community accepted that, but to be honest I seem to have to explain it more NOW then I ever did as a child (cause its a "childhood" disease, right?) and that disheartens me.
As for Liza's original post... I have friends that ask why I can't go smokey places or assume I can. Its like they know I have CF, but do not know or care to educate themselves on it at all. I don't have family that don't seem to remember what CF is, but I can imagine your frustration at that as well.
I wish I had better advice to you, but I agree that speaking from your heart to her is the best route. If you show up to talk about something they think is CP and is in fact CF, you may leave everyone more confused than necessary. Like, in my mind, if someone would come to talk to my class about CF and it was a class on neuromuscular disorders, I would find myself constantly trying to make the connection! lol Although, as I referenced in my above post, maybe people NEED to hear more about CF, so you could always go and just tell them it has nothing to do with CP and here is some info. on it so at least you could get the info. out there. Sneaky sneaky.... lol
Good luck!
It isn't fair to expect a nurse that normally does not deal with CF to know about it...especially a CNA.. CNA's have a total of six weeks of class at best... and they don't learn about health conditions.. They learn how to take vital signs, bed baths, etc.
q]
Jennifer,
I sort of agree with you, but also think its the medical community's responsibility to provide proper training (especially to an M.D. that deals with bone and joint conditions as many cfp will someday develop such conditions). I am mostly upset with those who TRAIN these doctors and CNA's and nurses, etc.
I also think if you don't know what something is, DO NOT pretend to me like you do... for example, when I asked the CNA if he knew what cystic fibrosis was, he said, "oh yes, absolutely..." and then went on to make the comment that I should understand how a MS patient should feel. I realize he probably has little or no knowledge of CF, but at least do not assume everything with an accronym is a muscular disorder.
Also, the facial surgeon also said he "knew" what cystic fibrosis was and proceeded to tell me how he thought only males could get it. At this point, I was able to educate him, but at the same time I was let down that a prestigious school for medicine had not better trained him.
CF is no longer that rare as many of us are living far longer lives and the medical community is having to "deal" with many more of us having "normal" people complications. I think the medical community has a responsibility to better educate people that they may be dealing with CF and its complications (or other complications that come about from having CF) since so many of us ARE getting older and WILL deal with the "outside" medical community at many stages in our lives. For example, docs all seem to know what diabetes is since it is a controllabe (in most cases) disease that most docs will eventually have a patient with it. Well, for things such as CF, why can't we make THAT commonplace in U.S. medicine? Why is it my responsibility to educate nearly every doctor that I see who is NOT a CF specialist on my condition? Does a diabetic have to go in and explain thier condition to everyone who is not an endo. doc? I doubt it.
I just wish it were getting better as we are living longer and that the medical community accepted that, but to be honest I seem to have to explain it more NOW then I ever did as a child (cause its a "childhood" disease, right?) and that disheartens me.
As for Liza's original post... I have friends that ask why I can't go smokey places or assume I can. Its like they know I have CF, but do not know or care to educate themselves on it at all. I don't have family that don't seem to remember what CF is, but I can imagine your frustration at that as well.
I wish I had better advice to you, but I agree that speaking from your heart to her is the best route. If you show up to talk about something they think is CP and is in fact CF, you may leave everyone more confused than necessary. Like, in my mind, if someone would come to talk to my class about CF and it was a class on neuromuscular disorders, I would find myself constantly trying to make the connection! lol Although, as I referenced in my above post, maybe people NEED to hear more about CF, so you could always go and just tell them it has nothing to do with CP and here is some info. on it so at least you could get the info. out there. Sneaky sneaky.... lol
Good luck!