Re: Oprah-SPREADING THE WORD-PLEEEEEEASE READ

[Guest guest]

Oh, Kari!

You are right all the e-mails in the world might not influence Oprah, but she

has done show about other illnesses that she doesn't have (like the breast

cancer show she did, where people at home actually checked their own breasts and

a few people found lumps and Oprah actually helped them save their own lives)

so maybe she will do this. Rosie O'Donnell's show was more about entertainment

but I think she did do a segment on a kid with CF. (one of the Kellogg's

scholarships?) Anyway I have some hope since Oprah's show is more about

raising awareness that Rosie's was.

I am so sorry that your husband's family didn't even tell you about what the CF

in the family could do to your own children. Didn't they know that it was an

inherited disease? I know that some people go into denial but wow. Your poor

sister-in-law, how hard was that for her to find out at 18 what CF means.....

CF has been kept a hush hush thing in so many families that is why so many

people do not know that it is in their history. That is why I feel that the

people who have CF now and their parents have a responsibility to get the word

out. I hope they give you a definitive answer soon. this must be agony not

knowing..

Oprah-SPREADING THE WORD-PLEEEEEEASE READ

Hello - I would just like to say that I did email Oprah as well as

Dr . phil since they are some what connected, and I think it would be

great if they would do a show to get the word of CF out there but I

just feel it wont happen. Rosie O'donnel has a nephew w/ Cf and I

watched her show from the very beggining and I cant remember her ever

haveing a show on CF! If the aunt of a child w/ cf wont do a show on

it then my hopes are not up on a stranger of the disease doing a show

on it. I will still keep writeing the Oprah show in hopes that she

will get the word of cf out there but I am very doubtful! I think the

word needs to be spread- more so in my case since the drs. are

telling me my son has CF and Im just now learning what it is and my

husbands sister hasCF also and Iwas never told much about the disease

because it was a hush hush topic. I had 7 miscarrages in the course

of my 2 children and still was never told much about the cf in the

family. I guess Im part to blame because I never took it upon myself

to learn about my sister inlaws disease since they kept it so

personal intill they said my son has it. So I think the word

definitly needs to be out there. I asked my husband when he learned

about his sisters disease and how his parents told him since we have

a 4 yr old that Im worried about and he said he didnt even know his

sister had a disease that she could die from intill he was 19 and he

is the youngest. He never new that he could be a carrier (which he is

intill our son got sick) I think thats sad that even his family dont

know! When I told his sister I thought that he(my husband) should of

been told this info- she told me that she had Cf and didnt know what

it was intill she was 18 and started going to a cf clinic, because

her mom never took the time to learn about cf!! THAT IS SOOO SAD TO

ME!!!!!So I do hope that the word gets out there soon!!!!!! People

need to be aware of the disease since its not so uncommon as people

say!!!! Sorry to rammble-Im just frusterated that my sons case cant

be confirmed! Thanks Kari

[Guest guest]

Rosie actually did a few shows on CF. In particular, they gave a young

girl with CF a scholarship and they showed everything she had to do

during the day and explained how it affected her life, it was very well

done and the girl was real cute. I taped it but now I can't find it.

Rosie is definately a CF advocate.

- mom to Emma 2 1/2 years old w/cf and acid reflux and Isabelle 4

1/2 years wo/cf

On Thu, 17 Apr 2003 02:42:49 -0000 " Kari " writes:

> Hello - I would just like to say that I did email Oprah as well as

> Dr . phil since they are some what connected, and I think it would

> be

> great if they would do a show to get the word of CF out there but I

> just feel it wont happen. Rosie O'donnel has a nephew w/ Cf and I

> watched her show from the very beggining and I cant remember her

> ever

> haveing a show on CF! If the aunt of a child w/ cf wont do a show on

>

> it then my hopes are not up on a stranger of the disease doing a

> show

> on it. I will still keep writeing the Oprah show in hopes that she

> will get the word of cf out there but I am very doubtful! I think

> the

> word needs to be spread- more so in my case since the drs. are

> telling me my son has CF and Im just now learning what it is and my

> husbands sister hasCF also and Iwas never told much about the

> disease

> because it was a hush hush topic. I had 7 miscarrages in the course

> of my 2 children and still was never told much about the cf in the

> family. I guess Im part to blame because I never took it upon myself

>

> to learn about my sister inlaws disease since they kept it so

> personal intill they said my son has it. So I think the word

> definitly needs to be out there. I asked my husband when he learned

> about his sisters disease and how his parents told him since we have

>

> a 4 yr old that Im worried about and he said he didnt even know his

> sister had a disease that she could die from intill he was 19 and he

>

> is the youngest. He never new that he could be a carrier (which he

> is

> intill our son got sick) I think thats sad that even his family dont

>

> know! When I told his sister I thought that he(my husband) should of

>

> been told this info- she told me that she had Cf and didnt know what

>

> it was intill she was 18 and started going to a cf clinic, because

> her mom never took the time to learn about cf!! THAT IS SOOO SAD TO

> ME!!!!!So I do hope that the word gets out there soon!!!!!! People

> need to be aware of the disease since its not so uncommon as people

> say!!!! Sorry to rammble-Im just frusterated that my sons case cant

> be confirmed! Thanks Kari

>

>

>

[Guest guest]

That was Libby Pelican who lives in my town of Colorado Springs. Her

older sister, , also has cf.

I worked with their mom, so I knew about cf before was born.

They are great girls.

Lenora

>Rosie actually did a few shows on CF. In particular, they gave a young

>girl with CF a scholarship and they showed everything she had to do

>during the day and explained how it affected her life, it was very well

>done and the girl was real cute. I taped it but now I can't find it.

>

>Rosie is definately a CF advocate.

>

> - mom to Emma 2 1/2 years old w/cf and acid reflux and Isabelle 4

>1/2 years wo/cf

>

>

>On Thu, 17 Apr 2003 02:42:49 -0000 " Kari " writes:

>> Hello - I would just like to say that I did email Oprah as well as

>> Dr . phil since they are some what connected, and I think it would

>> be

>> great if they would do a show to get the word of CF out there but I

>> just feel it wont happen. Rosie O'donnel has a nephew w/ Cf and I

>> watched her show from the very beggining and I cant remember her

>> ever

>> haveing a show on CF! If the aunt of a child w/ cf wont do a show on

>>

>> it then my hopes are not up on a stranger of the disease doing a

>> show

>> on it. I will still keep writeing the Oprah show in hopes that she

>> will get the word of cf out there but I am very doubtful! I think

>> the

>> word needs to be spread- more so in my case since the drs. are

>> telling me my son has CF and Im just now learning what it is and my

>> husbands sister hasCF also and Iwas never told much about the

>> disease

>> because it was a hush hush topic. I had 7 miscarrages in the course

>> of my 2 children and still was never told much about the cf in the

>> family. I guess Im part to blame because I never took it upon myself

>>

>> to learn about my sister inlaws disease since they kept it so

>> personal intill they said my son has it. So I think the word

>> definitly needs to be out there. I asked my husband when he learned

>> about his sisters disease and how his parents told him since we have

>>

>> a 4 yr old that Im worried about and he said he didnt even know his

>> sister had a disease that she could die from intill he was 19 and he

>>

>> is the youngest. He never new that he could be a carrier (which he

>> is

>> intill our son got sick) I think thats sad that even his family dont

>>

>> know! When I told his sister I thought that he(my husband) should of

>>

>> been told this info- she told me that she had Cf and didnt know what

>>

>> it was intill she was 18 and started going to a cf clinic, because

>> her mom never took the time to learn about cf!! THAT IS SOOO SAD TO

>> ME!!!!!So I do hope that the word gets out there soon!!!!!! People

>> need to be aware of the disease since its not so uncommon as people

>> say!!!! Sorry to rammble-Im just frusterated that my sons case cant

>> be confirmed! Thanks Kari

>>

>>

>>