Tuesday, November 25, 2008

CF Ignorance

It continues to amaze me how so many people can be so ignorant about the most common, fatal, genetically inherited disease among children in North America...

Raising awareness about Cystic Fibrosis might be the biggest reason I started and continue this blog...and, even though stories like the one above are sad, many people up north are being educated about the disease for the first time because of the national publicity this story is receiving. And, for that, I'm thankful.

Nate

54 comments:

Princess Talana said...

Over 1000 people have joined a facebook community about this today! CF is definitely being heard!

Emily said...

That is shocking! However, I think a lot of people are going to be educated when they hear about these misconceptions and people's reactions to them, and you're helping that effort.

Bob said...

The one quote about politics hit it dead on. When a legitimate need becomes "politicized" it usually has negative consequences.

I'm sure it's a strong motivation for you to keep up the great work.

Rick Lawrenson said...

Oh, Canada...

Sis Sarah said...

interesting

My cousin (adopted) had an ultrasound and they thought the baby may possibly have CF (I cant remember exactly how on earth they actually thought this) but they went to a geneticist. They knew her husband had had cousins that had it, one look at her (my cousin) from the geneticist, he asked what country she was from, she said the philipines, and he said well then there is no way on earth your child could have CF, no one in the phillipines has it.

I wonder if that is actually true.

careysue said...

Thanks Nate for bringing CF awareness to many people through your blog!

As we all know, knowledge is power!

(correct knowledge that is!)

Nancy Peacock said...

I'm Canadian and I listened to a talk show today about this very issue. To give the young lady who is the President of the Student Union credit she explained that because a motion was made it had to be recorded and voted on. Very few, if any, agreed with the student who made the motion that seemed to single out CF as not relevant to receive funds. The reason the motion was carried was because most of the students voting wanted "change". Another point to their credit is that the students at Carleton University have supported CF for 25 years and their last campaign topped them up to giving over a 100 thousand dollars during that time.

Adrienne said...

I am so disappointed to hear this. I am a (female) Canadian with CF who went to university and shined my butt off during Shinerama on frosh week. I was so proud to see Canadian University students supporting a cause which in my mind doesn't get half the support it should.
I am turning 30 in less than a month and am doing really well which I attribute to some great work by the Canadian CF foundation, it makes me sick to think that the biggest fund raiser they run each year is slowly dwindling away when the disease certainly isn't.
Thanks for posting this, it is sad but hopefully will raise some much needed awareness as I have recently found out that the University I went to has also dropped Shinerama however I am not sure why I just know they won't be getting any alumni funding from me!

A. said...

I am a Carleton University student who reads your blog daily. I support your cause 100%, and normally love your blog, however, today I have to disagree

There is SO much more to this story that is not being publicized... the media has sensationalized one persons view, in turn giving Carleton a very negative one.

As Nancy said, if a student makes a motion, the student body has to vote on it. MANY students believed that it was time to switch up the charity, for MANY different reasons. People get bored of the same thing over and over, and with a decling economy, people are more likely to not donate to something "that will be around next year". If people don't have an interest in donating to a particular charity, not much money is going to be raised...

I can assure you that "because it is a white person's disease" WAS NOT the reason everyone voted against shine-o-rama. They are looking to help out other charities that need it as well - we all know there are PLENTY out there. And they are not "giving up" on CF research - they may just divy up the raised $ among many charities, or rotate the charity they support every year. I personally, as a cancer survivor, would LOVE to see them run a big fundraiser for cancer research.

I don't understand why this is garnering so much media attention - I have run large charity events, changed which charity we've supported each year, and I didn't make the front page of globe and mail... I can understand that people will get upset and ticked off because “their” charity isn’t the one gettign supported, but when “their” charity has been supported for so many years, I think that’s a bit of a selfish view. It’s time to give others a chance too.


On another note, I'm sad at how many people think this reflects on all of Canada, and seem to think Canadians are uneducated, ignorant people. They read a media story about ONE person’s ideas, and seem to think we’re all like that. It’s a wonder I don’t think horrible things about all Americans from some of the news stories I’ve read…

This is the webpage for the Ontario Newborn Screening Program: http://www.newbornscreening.on.ca, if you take a look, you’ll notice that “CF information for parents” is the second item listed on the page. Every single baby born in Ontario (and many other provinces as well) is screened for CF, and if needed, further tested for 39 different CF mutations. We are fully aware of the consequences of CF, and how early intervention and management is so important. I don’t think that if we were “ignornant” and “uneducated” we would be doing this testing ….

Amy said...

I agree. Like you I am thankful for the publicity. Many people are hearing about CF for the first time, and perhaps because of the CUSA's decision, maybe they will donate for the first time too!

In response to "A"'s post above me....

It is not that we are pissed about CF not being the charity. It is GREAT they want to switch things up. It's the way in which it is claimed to be decided. That person's views and the reasoning discussed at the end of the motion. No disease affects the majority of people. THAT is what annoys use affected by CF.

Elaine said...

That's not even ignorance about CF, that's just plain ignorance.

Shannon said...

I didn't know much at all about CF until you opened up your blog to share with others. I also became an organ donor because of Tricia. If you are able to save one life through sharing this experience, then I'm sure you will be grateful that you did. I know God is pleased.

Tammy C said...

My eyes opend up lots after reading and following your blog.I guess with every disease there is always bad and good publicity!


When I was in 10th grade we moved to a new city where no one knew anything about our family,when I told somebody that both my mom and step mom had lost their lives to cancer they thought i made the story up because in their minds only old people got cancer.My mom was 41 and step mom was 40!Talk about ignorance.

Jamie and Angela said...

I can assure you that most of us "up north" are well aware of CF. A few uninformed students are not a reflection on an entire country. Canadian universities have been raising money through Shinerama for many years. There is absolutely no less awareness here than there is in the US.

N. said...

A. Thank you for your articulate response in support of Canadian people and their knowledge of CF.

I love reading this blog, but have been having a very hard time thinking up a response to this particular post. Why is it that Americans look down their noses at Canadian's and treat us as though we are lesser beings? To respond to that news article with "Oh Canada...." as though every Canadian was present at Carleton University that day and all share in that opinion is ignorant. I'm certain not every person in the states is perfectly educated with regards to CF, but you don't hear anyone saying "Oh America..."

There are lots of wonderful things with regards to CF and CF research happening in Canada. Please don't let one incident that has been sensationalized by the media be your determining factor on the ignorance of an entire nation.

Radar's Mom said...

It could be argued that society-wide, ignorance is actually one of the deadliest afflictions because it often leads to bad decisions and bad policies that affect lives - be it war or disease research. And ignorance is an "inclusive" affliction, so maybe CUSA could raise money to fight ignorance. It will always be an uphill battle to educate ignorance, but it's a necessary and worthwhile battle... thanks for fighting it Nate!

neilcharm said...

CF ignorance is everywhere, even here in South Africa, the small community of CFers in the different provinces dont know much and its basically up to the few doctors and parents to find ways to make life easier for our children. My Blessing is that my daughter is now 27 and lives in London where CF is continually looked at. She is in fact part of a trial that is on at the moment and it runs for 3 years. She is a very determined lass and figures that she has still lots to do in her life, like travel etc and wants to live as long as possible. She doesnt believe in pity or feeling sorry for herself - she just gets on with it. Thats why I say I am Blessed. To the SA Doctors and nurses, sisters and families of CFers, carry on - through Blogs like this we may still in unity conquer this illness. Blessings to you all.

mapsgirl said...

I'm going to join the other Canadians to say that the comments of one person do not reflect the whole country.

And due to A's post, I'm now going to see what other info on this story I can dig up.

Justin said...

No matter what the topic is, some people will always be ignorant to certain things. All you can do is spread the word as best you can. Until recently I didn't know much about CF. I found out that I carry the gene and that my husband would need to be tested to see if he does as well. It is because of your blog that I know as much as I do about CF. Thank you! Every person that you can educate on this disease is a blessing and something to be proud of. Everybody has to do their own part and you certainly do yours. Again, thank you! Don't get discouraged!

Mel said...

Your blog has brought great awareness to CF and transplants...

MilePost13 said...

A couple of quick points:

1) I'm not upset that the decision was made to change charities. As I said, I'm thankful that the school has done so much for CF research and awareness in the past, and changing charities (with wisdom and correct information) is something they should be able to do without criticism.

2) Nor am I offended that some students may have voted to change charities because they were told that CF "only affect(s) white people, and primarily men." While CF is not exclusively a white disease, the facts are that it does affect some races/ethnicities more than others.

3) I am discouraged that the decision of the students (the same students who are involved in this CF fund-raising effort every year) to change charities was made on bad information that nobody was willing/able to check into before making the decision. But, again, I'm thankful that the publicity this story is receiving will help to raise CF awareness.

4) Neither I nor any of my readers has said anything demeaning about Canadians, nor do I believe that the knowledge and behavior of this group of students represents an entire nation (does anyone seriously believe that about me?). The facts are that this was a group of Canadian students in a Canadian school. I would not have hesitated to write this post if this had been a group of American students in and American school.

5) Why is it that SOME Canadians think that anytime an American brings up anything that could be seen as bad publicity for Canada, it's because we Americans are simply searching for a good opportunity to look down our noses at Canadians and treat them as though they are lesser beings? Living in the southern US, I can't think of anyone I know who has ever had anything unjustly negative to say about our neighbors up north.

Nate

Ramona said...

am LIVID!
am a CF Canadian female living and struggling with this disease.

Kathy - mom of many said...

I hope it backfires and motivates more people to donate to CF causes. It could result in a positive thing. Just having the article published is spreading the word and teaching more people the truth about CF.

Jessie said...

i could not believe this article.I wrote about it on my blog also.
My daughter has CF and i hope they realize what they said.....pure ignorance

Cassy said...

I think this story has been blown way out of proportion. To take a story like this at face value before looking at the facts, and the whole picture, is ignorant. It seems like this all came from one person's "ignorance" about CF. It is ignorant of us, however, to label him as ignorant if we dont know anything about him. How do we know that he is ill informed about CF because he is really passionate about some other worthy cause that has impacted him personally? Nate, even you clearly only actively pursue causes that affect you and your family directly. That is only natural.Lets not make snap judgements about people and a situation that we really have no idea about. That just isnt right.

...I was also turned off by the "Oh Canada" comment. This story is certainly not a reflection of Canadians, so why does it provoke an "oh Canada"? If you like stereotypes, Canadians are known to be very inclusive, open minded, culturally sensitive, socially aware, and politically correct.

This post has certainly made me think, and I am grateful for that. A chance to broaden MY perspective and see the world through others' eyes is always welcome.

Lee said...

Because of your blog so many people are being educated to the facts of CF. I never even thought about CF much until I heard about you and Trish. I am embarrassed to say that I thought it was a disease that affected primarily the black population!
Unless it affects a person or family directly, most people do not educate themselves on diseases. I am so thankful you are helping change that about CF.
Keep on keepin' on, brother!

Joyful said...

Sometimes we hear only that which we want to hear and I'm so sorry that this decision was made based on assumption and not information. I'm so sorry that it reflects very poorly on our education. I was shocked as I read through the Globe and Mail article. I tried to remind myself that these are "kids" still and this is all part of learning, growing and the decision making process - whether right or wrong. I'm not saying they had to continue with donations to CF every year, but their reasoning reported here appears to be faulty.

My heart right now is praying for peace. Oh wouldn't Satan just love to stir this up to charity against charity; Country against Country. It's not me against you, or us against them - especially those of us who know the Lord. We are all His children - there are no boundary lines or more worthwhile diseases. Jesus healed the 'sick'. Reading some of these comments, I sense there is an even greater illness in hearts - one that can be even more deadly.

Nate, I only know you and your family through following your blog, but I've come to see your heart and I know NOTHING more was intended than to make us aware. May it not lead to "vain contraversies", for as 2 Timothy 2:16 says, "they will increase unto more ungodliness".

May our response today be prayer,
Joy

MilePost13 said...

Cassy...the facts are there. The person who brought the motion to the students made the statements about CF being a white, male disease (they have been verified)...so, either he was uneducated, reckless, or lying. I choose to hope that he was simply uneducated and not purposely deceiving people to carry out his own agenda.

And, the fact that these kids wanted to be "politically correct" is what has caused such a big commotion in the first place.

Missy said...

From what I have heard, we should not be surprised to hear this from "Cartoon University" (this....from one of their alumni)

There is not ONE SINGLE fatal disease that the student population at this university have more in common with than Cystic Fibrosis. This disease has an average age survivor in their 20's and 30's ----- a very YOUNG group historically. This is more so than your "average" age cancer patient or "average" age diabetes patient, etc. Not to take away from these conditions, but most university students are interested in things relevant to them and their lives. CF is very relevant.
It also helps to raise awareness among themselves, so the first time they here the word "CF" is not when they are holding their newborn with their future spouse.

This student body gets an "F" for their research. Let me guess....they searched for their "facts" on the internet?
Most data of the "origin" of CF is based on the first known mutations. If they interviewed a CURRENT reliable source, such as Ambry Genetics, they would find that there are mow over 1,000 different mutations of CF and it is present in a much broader base than ever believed before.

Every time I go to clinic in Indianapolis, I sit next to a now 27 year old black woman with CF. We shoot the talk and kill time in the waiting room. I can't wait to ask her how she got her "white disease"

Thank you Nathan for raising awareness on a poor decision, but at the very least an ignorant statement (whereas CF is only for 'white' people, and Cf affects only 'men')

di said...

hi nate,tricia and gwyneth
i have been reading ur blog since gwyneths birth and well watching tricia fight this horrible disease so bravely gave me so much hope for my daughter who also has cf,i just want u to tell these people that cf is neither a white mans or black mans disease it effects basically every nationality that i know and yes that includes philippinos too caucasions,africans,arabs,indians u just name it and u have it.

Kalani said...

I read in Discover Magazine that the Zuni American Indian tribe has the highest rate of CF. Something like 1 in 13 people are carriers. It was introduced ages ago by a Spanish or Italian "founder."

Kalani said...
This comment has been removed by the author.
Agnes said...

Ignorance is everywhere; and is everywhere hurtful!

walkingbyfaith said...

Wow.

I have to say, I honestly didn't know much about CF until coming upon your site, but I am so thankful for all the knowledge you've shared b/c I now am better educated on the subject. Thank you!

lindsay michele said...

I saw this too! And yes, my response was first shaking my head in disbelief and then being grateful for all the media surrounding it, getting the word out!

The Bear and The Bug said...

Wow! I can't believe how much people invest in "political correctness" without doing their research. But, Nate, you are right -- at least many more people will be educated about the disease due to this incident and thanks to people like you who devote so much time to raising awareness. Keep up the good work!

AHSATAN said...

I just wanted to let you know that Carelton University has reinstated the funding for this charity. Its a sad situation but in the long run it all worked out.

Christy said...

The one good thing about it is CF gets publicity.

Anyway, Jason says hi... thanks for the prayers!!

jessicagv said...

I think the main issue is that not one of us can make a judgement about this situation without ALL the facts.

Obviously, the article does not present them all.

Yes, if one ignorant student made that comment it does have to be reflected in the minutes. None of us can say whether the final decision was based on that comment.

I am sure Nate and all of us can agree that there is equal ignorance amongst SOME people in any country.

I do have to say though, that "OH Canada..." did feel very derogatory.

Either way, I hope that the media attention to this situation, whether the story is sensationalized or not, clears up the misconceptions.

The Country Mouse said...

I didn't think "Oh Canada" was as much of a slam as a silly takeoff on the national anthem (which, by the way, is about 1000% better and easier to sing than the U.S. national anthem). But I can see how it might have been received badly.

As a U.S. citizen who visits Canada often, I can tell you that hurtful comments and stereotypes don't just cross the border one way. However, I'm often too quick to be hurt by them.

My great hope is that one day we can all be a little kinder to one another, and all be a little less eager to take offense.

And now I'll go get the nebulizer ready for my stereotypical white male CF baby. :)

Kevin and Aimee said...

I am from canada and was Driving with my husband when i heard this story and was so shocked about how inaccurate their research was, the radio program though was quick to give some more accurate comments about CF. It wasn't until I found your Blog last christmas that I really came to hear much about CF or maybe just paid more attention. Anyway Just wanted to say that Indeed Canadians are hearing a lot about CF now because of this story as terrible as it is.
God Bless

mama in waiting said...

you know what, these university students will never be so careless with their motions in student government again. they have been ridiculed to within an inch of their lives...i heard all about it on our national radio news station, CBC, this afternoon.

but please, rick...don't paint all of us canadians with the same brush! CF continues to be supported by almost every other campus in ON, and most of us are smarter than to cite something from wikipedia to support a political motion...

Nancy Peacock said...

It's kind of funny really. I thought the "Oh Canada" was quite clever and funny (I'm speaking as a Canadian)! Maybe because I read Rick's blog and enjoy his tongue in cheek humour. I didn't get offended at all.
Actually Canadians are being a little overly sensitive in my opinion. Political correctness is alive and well in Canada, with an exception of impunity offered to any who speak with derision of:
1. Americans or
2. Christians
I'm just sayin'!

JD said...

That's the beauty in God's work.
We, being mere humans, can't see His greater plan... it may not seem to make sense at times, but it's always superior to what we could have possibly imagined. He has something up His sleeve!! (And He has very, very big sleeves!)

As we've seen in so many scriptures, for example "To give them beauty for ashes, the oil of JOY for mourning, the garment of praise for the spirit of heaviness; that they may be called trees of righteousness." Isaiah 61:3 God is the Almighty, he will use this according to His will, He will make good of it, turn those ashes to beauty.

In the meantime, we will continue to pray for those who need to understand things more accurately, that those involved will learn from this, and those who didn't understand much about CF will understand more because of this.

We will pray for tolerance and patience for those who are quick to be angered by other's shortfalling, faults, or mistakes, for none of us are perfect. We will pray that God meant for this to educate people on the realities of CF.


Peace,

Bonni said...

Hey Nathan,

I'll see your one 'Northerner' who put forward an uneducated motion at a meeting and raise you one equally uneducated 'Southerner' who showed up at my Canadian border-town museum with skis strapped to his roof rack - in August - asking for directions to the nearest ski hill.

Rick Lawrenson said...

Dumb knows no boundaries.

Debbie Nelson said...

My precious daughter, Jennifer, lost her battle with CF two years ago. She was twenty-eight years old. I am a respiratory therapist and work with CF patients daily at work. Your blog has inspired me and I pray for you and your family everyday.

LCM Web Design said...

Great news, the original decision has been reversed. http://www.nationalpost.com/news/canada/story.html?id=1018724

Lola said...

This ignorant situation did cause quite an uproar here in Ottawa. Thankfully, this misinformed vote and decision was overturned and the right individuals resigned.
LO

Wewurtskihit said...

I stumbled upon your blog through a CF IP who, like us, is having a baby through a surrogate mom. Until I started reading her blog and now subsequently yours, I am learning a lot about CF that I did not know before. Because even though I, of course, have HEARD about CF I was never educated about it. I didnt even know I could be a carrier until our IVF doctor made me take a gene test for CF.

So - calling someone ignorant because they did not read up on CF because they are not exposed to it is pretty ignorant.
Sorry, I need to be blunt but I am a highly educated person, who prides himself of wanting to learn about anything and everything.

Maybe instead of calling us ignorant and maybe, i say MAYBE, pushing other folks with less of a thick hide then mine away from the education you provide through your blog, you should embrace our "ignorance" as what it really is: societies inability to educate properly!!!

having said all that: I am definitely going to keep reading your blog (though it may take me a few weeks/months to catch up to it!)

Mark

eeb said...

I found out when I was pregnant that I am a CF carrier. Luckily, her father wasn't so it wasn't an issue.

I had never heard anything about CF until that prenatal appointment.

MilePost13 said...

Mark:

Thanks for sticking around to catch up with my blog...my guess is, that once you read more about our lives and find out more about who I am and why I blog, you'll realize that everything I write on this blog is written for a very specific reason, I am not apologetic for any of it, education about CF and other passions of mine is one of the top priorities of this blog (and of this post), and that I do not appreciate anyone (especially somebody who is new to my blog) telling me what and how I should blog.

Also, and I'm sure I don't have to tell your highly educated self this, but the definition for the word "ignorant" is: "The condition of being uneducated, unaware, or uninformed."

Correct me if I'm wrong, but that is exactly how you described yourself and the students in question...I dare say that my choice of words here was based on a very (actually, perhaps an elementary) educated understanding of the English language, which, by definition, would not have been very ignorant of me at all.

And, since you are also a self-proclaimed thick-skinned person, I'll assume you won't be offended by my bluntness. BTW, if you do stick around for a while, I think you'll find that the vast majority of the rest of my readers are also thick-skinned. :)

Wewurtskihit said...

Fair enough!

I guess I should have paid more attention in ESL class as to the work "ignorant"!

I HOPE you are not apologetic for writing about ANYTHING - especially CF which is of course dearest to your heart. Or any other passions of course.
Only through passion will the world be a better place!

Also, I never intended to tell you how to write your blog. All I was trying to tell you is that at first glance I felt insulted by the word "ignorant". Had you chosen the other meanings for it, like uneducated, I wouldnt have felt like an outsider being punished for not having taken the time to educate myself about every detail regarding CF or any other disease known to humankind.

I will surely learn more about CF reading yours and other blogs or any googled material I can find, and I will surely never be as knowledgable as you are since I am not exposed to CF on any basis.

And no, I am not offended by your bluntness. I think we will get along JUST fine!!! LOL

Rick Lawrenson said...

Ignorant people get offended by the word because they think it refers to a lack of thinking ability. Highly intelligent and educated people are ingnorant is some areas. That's not a slam.

Most Americans (and Canadians) probably can't speak Chinese. Not because they're stupid - most Americans (and Canadians) are of average or above intelligence and most are well educated.

We can't speak Chinese because we are ignorant of it. That's not a slam. It's a fact Jack (or Jacques).