Cystic Fibrosis?

Question

I was not gone to post no more questions on this subject because my only reason for asking just died. Id like to know WHY there is VERY LITTLE awarness on CYSTIC FIBROSIS when 1 out of 25 people carry the gene both parents have to carry the gene to pass it on and the odds of that are increasing every day. WHY are they still so focused on cancer and diabeties when there are cures for most types of cancer and with diet and some might have to take insilin you can live a fairly normal life. With CF there is NO CURE, you struggle to breath, without meds you become malnurished and even with meds maintaining weight is hard, even having kids of their own is a chalenge and with most males impossible. They say the average life exspectancy is 27 some live longer however many are lucky to reach their teen years.There is no quality of life because you spend most of it in and out off the hospital at the drs taking breathing treatments some have tube feeds, ect. SO WHY IS CF IGNORED??????????????????

Answer 1

The number of CF patients in the United States is around 30,000 I believe. It is unfortunate, but diseases that affect such a low percentage (hundredth of a percent) of the population will rarely receive the attention they merit. CF is important to me and I do all I can to make sure people I come across that have the disease get my extra attention. Gene therapy promises to lengthen their lives even longer. The disease does get attention, you just don't see it on the news.

Answer 2

Roseykat, first let me offer my condolences for your loss. This is a terrible thing. Your friend/family member was alive less than one week ago and now they are gone. It's tragic.

CF is practically an orphan disease. It's true that it is the most common genetically inherited disease, but since it "only" affects about 30,000 people in the USA (70,000 worldwide), it will never be a "glamour" disease. About 1,000 new cases of CF are diagnosed in the US each year. (Facts from http://www.cff.org)

In the USA alone, almost 1.5 million new cases of cancer are diagnosed each year. Over half a million people die from cancer each year. This is like comparing saving all the people on the Titanic or saving one guy in a rowboat.

You can say almost the same thing for any number of other diseases, like diabetes, hypertension, etc. EVERYONE knows many people who have had cancer or diabetes, for instance, but - unless it is in your family - most people only even come into contact with one person with CF.

Just because there is not a huge public awareness of CF does not mean that it is ignored. The CF Foundation is a tremendous organization and they do a lot for fundraising and coordination of research efforts. Check out the web site and see how active the CFF is.

Believe me, I have personal experience and I know how tragic and frustrating CF can be, so please do not take my remarks in a bad light. It's just the reality of things.

Answer 3

In a nutshell, cystic fibrosis affects all major organs and functions...and just in case you are concerned, it is not contagious as it is genetically linked (you are born with this). What you often hear about is how it clogs the lungs with thick mucous that can never be fully expelled and prevents good digestion (same mucous blocks the passages that secrete the enzymes required to break down food). Anyway...as a teacher...I hate to hear about any kid suffering...especially from such a terrible disease that rarely, if ever, gives the victim a moment of relief. I've provided sites from two national cystic fibrosis organizations that can give you more information on the disease and various resources for both victims and their families. Will keep her in my thoughts...and strength to you to...you are obviously affected by this news.

Answer 4

I think on a average most people don't know the specifics about CF. I don't think it's ignored, I think it's more a matter of making more of OUR voices heard about CF. I have a son with Cf and when I tell people about him, that say they have heard about CF but don't now the specifics. When I tell them, they are amazed at how he handles how many meds he's on and how many times a year he is hospitalized. It seems like you are feeling a personal pain right now and all I can offer you is my prayers. And yes, I have already said a prayer for you. As far as having no quality of life, most people I know with CF live life to the fullest.
If you feel like CF is ignored, then maybe you need to be a voice in the cause. Sounds like you know alot about it and you are motivated.

Answer 5

Its not that CF is ignored but I think we could do a lot more to raise awareness. I do think it would be nice if we had huge million people marches the way cancer and HIV/AIDs and such do. We do have "Great Strides" and "64 Roses" but it seems like everyone you ask for support. Already supported the cancer scociety, or some thing.

Answer 6

It isn't in the media spotlight enough. The public need to be educated big time about it and big fund-raising events are needed with prominent people lobbying for research, pt. care and public and government involvement then maybe something might happen.

Answer 7

it isnt overlooked as people who have it live far longer than they used to,the main problem is the only real cure is heart lung transplant and they are not always available