How did you educate everyone?

[lexisangels05]

<P>I was just wandering how you educated your family and friends about you or your child's CF?  Most people, I know, have no idea what CF is...much less what it takes to keep someone healthy.</P>
<P> </P>
<P>Did you sit folks down, make a little book, ect?</P>
<P> </P>

 

[lexisangels05]

<P>I was just wandering how you educated your family and friends about you or your child's CF? Most people, I know, have no idea what CF is...much less what it takes to keep someone healthy.</P>
<P></P>
<P>Did you sit folks down, make a little book, ect?</P>
<P></P>

 

[lexisangels05]

<P><BR>I was just wandering how you educated your family and friends about you or your child's CF? Most people, I know, have no idea what CF is...much less what it takes to keep someone healthy.</P>
<P></P>
<P>Did you sit folks down, make a little book, ect?</P>
<P></P>

 

[Ratatosk]

For close family and friends, we told them DS had CF and explained it in generalities. Suggested the CFF website and were available to answer any questions. Think we also had some pamphlets from the CFF as well. Most people asked and we'd tell them about it. Most people are genuinely concerned and ask questions, so it's a bit easier.

 

[Ratatosk]

For close family and friends, we told them DS had CF and explained it in generalities. Suggested the CFF website and were available to answer any questions. Think we also had some pamphlets from the CFF as well. Most people asked and we'd tell them about it. Most people are genuinely concerned and ask questions, so it's a bit easier.

 

[Ratatosk]

For close family and friends, we told them DS had CF and explained it in generalities. Suggested the CFF website and were available to answer any questions. Think we also had some pamphlets from the CFF as well. Most people asked and we'd tell them about it. Most people are genuinely concerned and ask questions, so it's a bit easier.

 

[Mommafirst]

Mostly I just talk. I explain it in very simple terms, and I try to avoid any emotion as I explain it. I tell them they can ask any questions and it won't upset me. Over time, my openness makes it easy to bring up questions. Most of our friends are very knowledgeable because I talk about it so much.

 

[Mommafirst]

Mostly I just talk. I explain it in very simple terms, and I try to avoid any emotion as I explain it. I tell them they can ask any questions and it won't upset me. Over time, my openness makes it easy to bring up questions. Most of our friends are very knowledgeable because I talk about it so much.

 

[Mommafirst]

Mostly I just talk. I explain it in very simple terms, and I try to avoid any emotion as I explain it. I tell them they can ask any questions and it won't upset me. Over time, my openness makes it easy to bring up questions. Most of our friends are very knowledgeable because I talk about it so much.

 

[Mommafirst]

Mostly I just talk. I explain it in very simple terms, and I try to avoid any emotion as I explain it. I tell them they can ask any questions and it won't upset me. Over time, my openness makes it easy to bring up questions. Most of our friends are very knowledgeable because I talk about it so much.

 

[Mommafirst]

Mostly I just talk. I explain it in very simple terms, and I try to avoid any emotion as I explain it. I tell them they can ask any questions and it won't upset me. Over time, my openness makes it easy to bring up questions. Most of our friends are very knowledgeable because I talk about it so much.

 

[Mommafirst]

Mostly I just talk. I explain it in very simple terms, and I try to avoid any emotion as I explain it. I tell them they can ask any questions and it won't upset me. Over time, my openness makes it easy to bring up questions. Most of our friends are very knowledgeable because I talk about it so much.

 

[khavice]

I agree with Heather. A lot of people in my family/life just asked. You will get insensitive questions, so be prepared for that. However, most people are just curious. When we started fund raising (about 8 months after diagnosis), the first letter we sent out had a lot of information about CF in it. That took care of some of the basic stuff.

When Abby started 1st grade and would be taking enzymes in school, we had her social worker and a nurse from her clinic come in and talk to her class about CF. Even brought her vest in so the kids could see what life was like for her. There is a Bill Nye the Science Guy video out there too that is very informative for small kids.

Now that she's in middle school, she wants to blend in and not be "different". If someone sees her taking a pill and asks her about it, she tells them as much as she is comfortable. I don't think she is ashamed, because a lot of her friends know and don't care.

CF varies so much from person to person that I do not direct close family to sites like WebMD, etc. I know it freaked me out when they were talking about testing her for it. The www.cf.org is good, though general.

Hope this helps a bit....

 

[khavice]

I agree with Heather. A lot of people in my family/life just asked. You will get insensitive questions, so be prepared for that. However, most people are just curious. When we started fund raising (about 8 months after diagnosis), the first letter we sent out had a lot of information about CF in it. That took care of some of the basic stuff.

When Abby started 1st grade and would be taking enzymes in school, we had her social worker and a nurse from her clinic come in and talk to her class about CF. Even brought her vest in so the kids could see what life was like for her. There is a Bill Nye the Science Guy video out there too that is very informative for small kids.

Now that she's in middle school, she wants to blend in and not be "different". If someone sees her taking a pill and asks her about it, she tells them as much as she is comfortable. I don't think she is ashamed, because a lot of her friends know and don't care.

CF varies so much from person to person that I do not direct close family to sites like WebMD, etc. I know it freaked me out when they were talking about testing her for it. The www.cf.org is good, though general.

Hope this helps a bit....

 

[khavice]

I agree with Heather. A lot of people in my family/life just asked. You will get insensitive questions, so be prepared for that. However, most people are just curious. When we started fund raising (about 8 months after diagnosis), the first letter we sent out had a lot of information about CF in it. That took care of some of the basic stuff.
<br />
<br />When Abby started 1st grade and would be taking enzymes in school, we had her social worker and a nurse from her clinic come in and talk to her class about CF. Even brought her vest in so the kids could see what life was like for her. There is a Bill Nye the Science Guy video out there too that is very informative for small kids.
<br />
<br />Now that she's in middle school, she wants to blend in and not be "different". If someone sees her taking a pill and asks her about it, she tells them as much as she is comfortable. I don't think she is ashamed, because a lot of her friends know and don't care.
<br />
<br />CF varies so much from person to person that I do not direct close family to sites like WebMD, etc. I know it freaked me out when they were talking about testing her for it. The www.cf.org is good, though general.
<br />
<br />Hope this helps a bit....
<br />

 

[JennyCoulon]

<P>The very first thing I do is to tell them NOT to go surfing on the internet. I have found that there is so much info on the internet, much which is out-dated and doesn't pertain to my children. I would maybe explain the basics but then explain how CF directly affects your child. You might explain it to some people and they will immediately feel sorry for you and tell you they are sorry. I dont want peoples sympathy and I do not want them to treat my children differently than they did before they knew.</P>
<P> </P>
<P>I have a 6 year old and real honestly we dont tell a lot of people unless it is one of his friends and he needs enzymes if he goes with them. Our 12 year old has a couple of his buddies and their parents that know b/c they have been his best friends for years. I hear a lot from people that we do tell that they would have never guessed anything was wrong with them. Hope this helps a little bit.</P>

 

[JennyCoulon]

<P>The very first thing I do is to tell them NOT to go surfing on the internet. I have found that there is so much info on the internet, much which is out-dated and doesn't pertain to my children. I would maybe explain the basics but then explain how CF directly affects your child. You might explain it to some people and they will immediately feel sorry for you and tell you they are sorry. I dont want peoples sympathy and I do not want them to treat my children differently than they did before they knew.</P>
<P></P>
<P>I have a 6 year old and real honestly we dont tell a lot of people unless it is one of his friends and he needs enzymes if he goes with them. Our 12 year old has a couple of his buddies and their parents that know b/c they have been his best friends for years. I hear a lot from people that we do tell that they would have never guessed anything was wrong with them. Hope this helps a little bit.</P>

 

[JennyCoulon]

<P><BR>The very first thing I do is to tell them NOT to go surfing on the internet. I have found that there is so much info on the internet, much which is out-dated and doesn't pertain to my children. I would maybe explain the basics but then explain how CF directly affects your child. You might explain it to some people and they will immediately feel sorry for you and tell you they are sorry. I dont want peoples sympathy and I do not want them to treat my children differently than they did before they knew.</P>
<P></P>
<P>I have a 6 year old and real honestly we dont tell a lot of people unless it is one of his friends and he needs enzymes if he goes with them. Our 12 year old has a couple of his buddies and their parents that know b/c they have been his best friends for years. I hear a lot from people that we do tell that they would have never guessed anything was wrong with them. Hope this helps a little bit.</P>

 

[sdelorenzo]

I write a letter each year explaining how Cf affects my children. I send this letter out for Great Strides.
I also include a newspaper article from the past year about new medications, etc. This way I get a chance to
share with everyone how my children are doing, what is needed to keep them healthy and what research is being done to help CF. I don't talk it about it much through the year, so sending a letter out really helps people understand.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF

 

[sdelorenzo]

I write a letter each year explaining how Cf affects my children. I send this letter out for Great Strides.
I also include a newspaper article from the past year about new medications, etc. This way I get a chance to
share with everyone how my children are doing, what is needed to keep them healthy and what research is being done to help CF. I don't talk it about it much through the year, so sending a letter out really helps people understand.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF