Something for Everyone

[KICKSTART]

Firstly please read the next sentence very carefully....

This is NOT a thread to say one illness is far worse than another , its only to do with publicity !

Why is it when i turn on the tv i see lots of adverts for cancer charities , helplines, stars fundraising , fundraising events, asking people to make donations and a whole general awareness of the illness ? Yet in all my time , i havent seen anything to bring awareness about kidney failure, how people dont have to be dead to donate , no fundraising , no events relating to it , no sponsorship , nothing. I wonder why the kidney foundation dont make more effort to raise awareness ? I know they do alot of good work behind the scenes , but why dont they seek out the publicity , like cancer charities do?

[nursewratchet]

NKF is having the Kidney Walk in San Antonio this Saturday.  I'll be there.  Davita also has a Kat Walk every year, and the Tour Davita bike race every year.  Millions are raised each year.  However, I agree that unless you are somehow connected to ESRD, you really don't hear about these events.  Good point!  What can we do to get this changed?  Ideas anyone?

[Pam]

Very good point KS. Last month 5 Fresenius clinics had a Kidney walk. They gave us fliers to pass out and that  was the only advertising I saw. The news media advertises for food drives, coats for kids etc., etc. maybe they are the problem , they don't realize how serious our problems are. I can pass out fliers and wear my t-shirt but don't know how much attention I would get.
Pam

[paris]

Our area Kidney Walk gets tv and press coverage. Our family are big participants.  I think the new tv show "Three Rivers" (always about tranplants) may help to give some awareness.  Last night show was about kidneys.   I do wish the celebreties that have had kidney transplants were for visible and more identifiable. There voices could be heard louder than ours.   But, there really isn't enough education about kidney failure.   My sister's husband has liver failure and she is as frustrated as we all are.  No big public support for them either.   What do we do?   Keep speaking up --- someone may listen,

[KICKSTART]

Im sure things must go on over here  but if even i as a patient dont know about them , then how are others supposed to know ? Even when i started on dialysis i wasnt told of the NKF or the fact that there were actual support groups local to me, i had to dig this info out myself. I joined the NKF (yes they charge a membership) and im sad to say all i get is a booklet once a year .

[Darthvadar]

I'm with you, Kickstart....

I find it very annoying that publicity is harder to get for one chronic condition over another....

Mum and I  are members of the Irish Kidney Assoc., and they don't charge a membership fee... They're very good at keeping members abreast of what's going on...

Hope things are getting better for you in relation to your dialysis....

God bless...

Darth....

[paris]

I wonder if other diseases have to do so much of their own research?   If it weren't for IHD, I would have never known about IVIG and things like that.  No doctors never brought up the subject.   Your thread has me doing lots of thinking, Kickstart.   

[Goofy]

Our Secretary of State puts an emphasis on signing the back of your drivers license indicating that you are an organ donor.  We even have state license plates specifically geared to organ donation.  They don't necessarily push one particular disease but they encourage people to do the license thing.

I don't think there is even a handful of people at work who knew anything about kidney disease or any organ transplant.  But when you think of it, if you don't have anyone close to you needing an organ, you probably wouldn't pay too much attention.

Quick example of how people don't know......I had a kidney transplant.  My husband called my manager.  The manager sent out an e-mail telling everyone that I got the new kidney.  Less than 48 hours later, they were taking it out because I formed a blood clot and the kidney was dieing.  So now my husband calls him back to let me know I wouldn't be coming back to work with a new kidney.  This is the best part.......my manager sent out another e-mail to everyone telling them how the new kidney failed and they were going to put my old one back in!!  All I could do was laugh but it also makes you realize how much people don't know.

I even printed the e-mail and gave it to my neph!  Yes, we need more attention drawn to kidney disease and transplantation.

[paul.karen]

I think you need someone Rich and Famous to decide that they want to take up the cause.

If not effecting that person directly then someone in his/her life.
Natalie Cole had a good chance to take up the cause but she got a kidney and that is that.

Someone like Michael J. Fox who has taken up his cause and is spreading the word best he can.  A true advocate not just someone who needs a kidney or liver and gets one, we dont hear about it after that point.

Luckily medicare took notice and has done what they have or many people may not be here today.

[Romona]

My daughter's class was talking about awareness symbols. The kids knew the pink ribbon, the yellow live strong bracelets. Very few of them knew the green ribbons for kidney disease and transplant awareness. Every store carries the pink ribbon items.

[KICKSTART]

See even i have NEVER heard of the green ribbons , true im in a different country , but it must be universal? We have the pink ribbons over here , we have pink days , we have pink products , we have companies donating a % of the sale of pink products. But Green ? well it just goes to show!

[Darthvadar]

I've never heard of the green ribbon, either....

The symbol used here is a 'Forget-Me-Not' flower grafted onto a twig....

The 'Forget-Me-Not' flower is a symbol for life - dead wood of the Irish Kidney Association emblem represents the failed organ and the bandaged graft, with the new flower, symbolises the transplanted life giving organ. www.ika.ie

Darth....

[Ken Shelmerdine]

I sent the song that I wrote and recorded 'Blood Machine' to the NKF hoping they would help me to market it in order to create organ donor awareness but I never heard anything back from it. 

[paris]

I like that symbol!  Very nice thought--forget me not and then new life.  Maybe they have the right idea.  Any artists that could draw something for us?  You have us all talking productively today, Kickstart. 

[RightSide]

I think you need someone Rich and Famous to decide that they want to take up the cause.
....
Natalie Cole had a good chance to take up the cause but she got a kidney and that is that.

Well, that's the problem.

With cancer or Parkinson's disease, the treatment is the same whether you an average Joe or a Hollywood celebrity.  Mastectomy or chemotherapy can be rough, whether you're an average Joe or a Hollywood star.

But with a disease like kidney failure that reqiures an organ transplant, it really looks like celebrities have an easier time getting organ transplants: Steve Jobs, Natalie Cole, etc.    Natalie Cole was on dialysis less than a year before she got the transplant.  Because she had the advantage of appearing on Larry King Live to talk about her kidney disease, after which she got a zillion offers from donors.

So it's hard for someone like that to be a spokesperson for the rest of us, who can be stuck on a transplant list waiting for 5 years or longer.

[lizabee]

I notice that there is not much publicity related to kidney disease of any kind.  I do the walk for PKD every year and it seems to get smaller and smaller.  The smallest radio station around is the only publicity there is and I always wonder why.  There are so many people with ESRD, but it is necer publicly discussed.

[KICKSTART]

Paris, ive just noticed your BIG green ribbon  I always thought you were being flamboyant  trust me !

Darth ,i havent even heard of the forget me not symbol.

Ken, no offence but i dont even think i would buy a song called 'Blood machine' !!! and if i did i would be expecting it to be a Marilyn Manson song ! 

Other comments that have been made have the emphasis on stars not being spokes people because they have their transplants, but most of the people over here that promote cancer awareness havent had cancer.
Maybe thats why a room goes quiet when the big 'C' is mentioned and yet if kidney failure is mentioned you get , oh so when will you be better ?

[paris]

Kickstart   LOL!   AlohaBeth designed it for our Kidney Walk team.  Our first walk was just weeks after Goofynina's death. So the Eiffle tower is me, the tiara is Goofynina and then the ribbon for organ donation.   Flamboyant!! So not me!  LOL

[monrein]

March is Kidney Month in Canada and there is a volunteer based door-to-door fundraising drive.  When I first moved into this house in 1983 I was on dialysis and one of my neighbours came knocking to "raise awareness" as she put it and of course to ask for donations. 

[KICKSTART]

Kickstart   LOL!   AlohaBeth designed it for our Kidney Walk team.  Our first walk was just weeks after Goofynina's death. So the Eiffle tower is me, the tiara is Goofynina and then the ribbon for organ donation.   Flamboyant!! So not me!  LOL

Darrrrhling . how could you not be flamboyant with a name like Paris ! Now i realise what it all stands for what a fitting tribute !

[zona]

Kickstart, I have been thinking the same thing. I see all the pink stuff for sale and I think what about us.Even my medicine bottles have pink tops on them now.

[nursewratchet]

Why don't we write a letter to both Natalie Cole and George Lopez.  He got a transplant a couple of years ago.  See if they would openly discuss it, maybe a PSA on TV?  I'll volunteer to write he letters... Just a thought.

[KICKSTART]

Why don't we write a letter to both Natalie Cole and George Lopez.  He got a transplant a couple of years ago.  See if they would openly discuss it, maybe a PSA on TV?  I'll volunteer to write he letters... Just a thought.

Er because im British  ! 

[billybags]

I must admit before my husband had kidney problems, I was not interested. I knew absolutly nothing. Even now when you mention to people, "my husband is on dialysis" they havent got a clue. I am a bit naughty because I always say to them. "Do you know much about kidney deases" they say "no" so then I start to tell them, most people are interested, some are not. As people on here say, you hear  what is happening, about breast cancer. prostrate, and kidney decease it hardly gets a look in. A few years down the line there is going to be an explosion of kidney patients and rescources, sad to say will not be able to cope. Why is there not loads of information constently  out there about kidney decease and  diabetis and what can happen. 

[zona]

I have had people say to me oh kidney disease,well at least it's not cancer. They have no clue how serious of an illness it is.