Hi,I'm a first year medical student in the UK and have been set an assignment to write a newspaper article about CF. The idea is whether CF is the problem of the individual sufferer or of society as a whole, and whether information is widely available about the disease. I'm really struggling with this one and would appreciate it so so much if I could get some views on these ideas. If you're a CF sufferer or a carer of a sufferer how do you feel about the idea that it's just 'their' problem? Or is it one that society should deal with? Do you find much prejudice in life against you because you have this disease? Do you think that it is a 'hidden' disease and something that is socially unacceptable? I'm really interested and rather stuck at the moment!! This counts towards my final grade and would be so grateful for some feedback.Abixxx
Cystic Fibrosis Forum (EXP)
This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!
CF- a 'hidden' disease?
- Thread starter anonymous
- Start date
First of all no, I feel no prejudice at all because I have the disease...I mean most people aren't prejudiced against sick people, especially when it is a genetic disease. Also, I dont really get what you mean about it being something society should "deal" with. CF by nature of its being genetic is never at risk of being an "epidemic" and therefore is not really in the hands of society. The only thing that I can think of for you to write about is the fact that because most people with CF look so normal, do not look sick, sometimes people dont understand the what the disease really is. Diseases like cancer, or other genetic diseases like Diabetes, get so much attention and the everyday person knows what they are, but CF often gets left in the dust...maybe it is because of its terrible name which has nothing to do even with the disease, but was given before they had any idea what CF was. I dont feel as if I am a certain "section" of society because I have CF, so I think you should steer clear from those types of generalizations.
Hi Abi,My daughter has CF and in a way it is a hidden disease. At this time, if you look at her you would never know that she has anything "wrong" with her healthwise. But it is not socially unacceptable.CF is not just "their" problem though. It is the problem of the whole family and therefore to some extent, it could be considered society's problem too.. We all have to deal with CF in some way, if we have a family member with it. Especially those of us with small children. my husband and I have to deal with insurance companies, pharmacies, meds and doses, chest physio, tube feeds and many other things for our daughter because she is only 5. The big thing that society can do about CF is raise awarenes. Most people don't know what CF is and it is the most common genetic problem for caucasians. Most of us know more about hemophelia than we do about CF. Information about CF is avalable if you go hunting for it, but it is never right there in front of you like info on diabetes, cancer or other illnesses.I am happy to answer any questions, feel free to visit our family site at http://groups.msn.com/TeamRachelJane Andrea
I wasn't trying to generalise. my question was do you find that poeple DO generalise? Thank you to the second reply though, to Andrea, that was really helpful. The assignment is a bit bamboozling to be honest!! I shall have a look at your website and thanks again for your reply. I hope your little girl stays as well as possible and good luck to you all. 
Abi
AbiWell, apparently I was no help in my first post, you seem to have been offended. No I do not find that people generalize, but that they just do not know enough information about CF, and often can be fooled by the disease because someone may look healthy when they are not. I hope your paper goes well, if you have any questions I am a 20 year old w/ CF with a lot of experience with this disease, so feel free to post any other questions. -The first person who posted
Hello, From my experience CF is the worst disease on earth, especially if you have to deal with it alone. It can not be treated or cured and you live your life on the edge. The worst of all is that you dont die until late which make it horrible for a CF er, and if your male it is worse.
"cannot be treated"? What are you talking about? There are lots of treatments out there for someone with Cf. Albuterol, antibiotics-oral, inhaled and IV, Chest percussion, mucus thinners like pulmozyme, enzymes, glutathione..........the list of treatments goes on and on. None of them are cures but they are treatments that can give you a healthier life. The happy part you have to do for yourself.Andrea