Why are some people so ignorant ????

[AnD]

Before the genetic tests, I had <i>4 cf clinics </i>tell my <i>parents</i> the same thing! I've had 4 sweat tests in 4 different clinics because no one believed it, because I looked/was too healthy.

Next time, just tell her that keeping him that way is the reason you do all his medicines and PT everday, and thanks for the compliment on you and your son's hard work <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

Before the genetic tests, I had <i>4 cf clinics </i>tell my <i>parents</i> the same thing! I've had 4 sweat tests in 4 different clinics because no one believed it, because I looked/was too healthy.

Next time, just tell her that keeping him that way is the reason you do all his medicines and PT everday, and thanks for the compliment on you and your son's hard work <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

Before the genetic tests, I had <i>4 cf clinics </i>tell my <i>parents</i> the same thing! I've had 4 sweat tests in 4 different clinics because no one believed it, because I looked/was too healthy.

Next time, just tell her that keeping him that way is the reason you do all his medicines and PT everday, and thanks for the compliment on you and your son's hard work <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

Before the genetic tests, I had <i>4 cf clinics </i>tell my <i>parents</i> the same thing! I've had 4 sweat tests in 4 different clinics because no one believed it, because I looked/was too healthy.

Next time, just tell her that keeping him that way is the reason you do all his medicines and PT everday, and thanks for the compliment on you and your son's hard work <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[amber682]

Whenever someone asks how my son is doing and we get on to the CF topic, my gramma always says how he's doing so well that she just doesn't believe he has it. She thinks the doctors are wrong and someday will diagnose him with something else. I've told her how we know what 2 gene mutations he has, his sweat test was positive, he's pancreatic insufficient, he cultures staph and steno. He's been hospitalized for exacerbations. He has CF.

It makes me mad because of all we do every day to keep my son healthy. She also feels that if I want another child I should just do it, and everyone will pray, and it'll all be fine. (She's very religious, a reverend in fact.) That is crazy to me, I personally would not risk it, a whole church full of people praying or not!

I love her very much and know she means the best, but it drives me nuts. She would never say NOT to do his meds or go to clinic, etc. She understands the importance of it all, but I think she is standing in faith that God will heal him. I'm not holding my breath.

 

[amber682]

Whenever someone asks how my son is doing and we get on to the CF topic, my gramma always says how he's doing so well that she just doesn't believe he has it. She thinks the doctors are wrong and someday will diagnose him with something else. I've told her how we know what 2 gene mutations he has, his sweat test was positive, he's pancreatic insufficient, he cultures staph and steno. He's been hospitalized for exacerbations. He has CF.

It makes me mad because of all we do every day to keep my son healthy. She also feels that if I want another child I should just do it, and everyone will pray, and it'll all be fine. (She's very religious, a reverend in fact.) That is crazy to me, I personally would not risk it, a whole church full of people praying or not!

I love her very much and know she means the best, but it drives me nuts. She would never say NOT to do his meds or go to clinic, etc. She understands the importance of it all, but I think she is standing in faith that God will heal him. I'm not holding my breath.

 

[amber682]

Whenever someone asks how my son is doing and we get on to the CF topic, my gramma always says how he's doing so well that she just doesn't believe he has it. She thinks the doctors are wrong and someday will diagnose him with something else. I've told her how we know what 2 gene mutations he has, his sweat test was positive, he's pancreatic insufficient, he cultures staph and steno. He's been hospitalized for exacerbations. He has CF.

It makes me mad because of all we do every day to keep my son healthy. She also feels that if I want another child I should just do it, and everyone will pray, and it'll all be fine. (She's very religious, a reverend in fact.) That is crazy to me, I personally would not risk it, a whole church full of people praying or not!

I love her very much and know she means the best, but it drives me nuts. She would never say NOT to do his meds or go to clinic, etc. She understands the importance of it all, but I think she is standing in faith that God will heal him. I'm not holding my breath.

 

[amber682]

Whenever someone asks how my son is doing and we get on to the CF topic, my gramma always says how he's doing so well that she just doesn't believe he has it. She thinks the doctors are wrong and someday will diagnose him with something else. I've told her how we know what 2 gene mutations he has, his sweat test was positive, he's pancreatic insufficient, he cultures staph and steno. He's been hospitalized for exacerbations. He has CF.

It makes me mad because of all we do every day to keep my son healthy. She also feels that if I want another child I should just do it, and everyone will pray, and it'll all be fine. (She's very religious, a reverend in fact.) That is crazy to me, I personally would not risk it, a whole church full of people praying or not!

I love her very much and know she means the best, but it drives me nuts. She would never say NOT to do his meds or go to clinic, etc. She understands the importance of it all, but I think she is standing in faith that God will heal him. I'm not holding my breath.

 

[amber682]

Whenever someone asks how my son is doing and we get on to the CF topic, my gramma always says how he's doing so well that she just doesn't believe he has it. She thinks the doctors are wrong and someday will diagnose him with something else. I've told her how we know what 2 gene mutations he has, his sweat test was positive, he's pancreatic insufficient, he cultures staph and steno. He's been hospitalized for exacerbations. He has CF.

It makes me mad because of all we do every day to keep my son healthy. She also feels that if I want another child I should just do it, and everyone will pray, and it'll all be fine. (She's very religious, a reverend in fact.) That is crazy to me, I personally would not risk it, a whole church full of people praying or not!

I love her very much and know she means the best, but it drives me nuts. She would never say NOT to do his meds or go to clinic, etc. She understands the importance of it all, but I think she is standing in faith that God will heal him. I'm not holding my breath.

 

[amber682]

Whenever someone asks how my son is doing and we get on to the CF topic, my gramma always says how he's doing so well that she just doesn't believe he has it. She thinks the doctors are wrong and someday will diagnose him with something else. I've told her how we know what 2 gene mutations he has, his sweat test was positive, he's pancreatic insufficient, he cultures staph and steno. He's been hospitalized for exacerbations. He has CF.

It makes me mad because of all we do every day to keep my son healthy. She also feels that if I want another child I should just do it, and everyone will pray, and it'll all be fine. (She's very religious, a reverend in fact.) That is crazy to me, I personally would not risk it, a whole church full of people praying or not!

I love her very much and know she means the best, but it drives me nuts. She would never say NOT to do his meds or go to clinic, etc. She understands the importance of it all, but I think she is standing in faith that God will heal him. I'm not holding my breath.

 

[pnhuffman]

Another thing that some people ask me is "Will he out grow it?" That also came from the lady I was talking about earlier in my post. If anyone should know she should that you don't outgrow this.

 

[pnhuffman]

Another thing that some people ask me is "Will he out grow it?" That also came from the lady I was talking about earlier in my post. If anyone should know she should that you don't outgrow this.

 

[pnhuffman]

Another thing that some people ask me is "Will he out grow it?" That also came from the lady I was talking about earlier in my post. If anyone should know she should that you don't outgrow this.

 

[pnhuffman]

Another thing that some people ask me is "Will he out grow it?" That also came from the lady I was talking about earlier in my post. If anyone should know she should that you don't outgrow this.

 

[pnhuffman]

Another thing that some people ask me is "Will he out grow it?" That also came from the lady I was talking about earlier in my post. If anyone should know she should that you don't outgrow this.

 

[pnhuffman]

Another thing that some people ask me is "Will he out grow it?" That also came from the lady I was talking about earlier in my post. If anyone should know she should that you don't outgrow this.

 

[wanderlost]

When my son was 10 days old, he developed meningitis, but we didn't know that was what he had at first as it didn't present like normal meningitis, so I had to give my medical history to multitudes of docs, residents and students. The infectious disease team, who ended up taking over my son's care, asked my mother and me multiple times if I was sure I had CF. Finally i spouted off my mutations and they shut up, but it was really annoying. My guess is being at a children's hospital they mainly saw sick children adn I didn't fit into that archetype. Still.

Also, in high school I remember kids saying thingns like "I heard you're going to die soon" or "Don't you have cerebral Palsy?"

It was super annoying.

But Amy is right, people aren't educated about Cf unless they see a blurb on TV or in Good Housekeeping Magazine or something, which we all know gives a lot of generic generalized info.

 

[wanderlost]

When my son was 10 days old, he developed meningitis, but we didn't know that was what he had at first as it didn't present like normal meningitis, so I had to give my medical history to multitudes of docs, residents and students. The infectious disease team, who ended up taking over my son's care, asked my mother and me multiple times if I was sure I had CF. Finally i spouted off my mutations and they shut up, but it was really annoying. My guess is being at a children's hospital they mainly saw sick children adn I didn't fit into that archetype. Still.

Also, in high school I remember kids saying thingns like "I heard you're going to die soon" or "Don't you have cerebral Palsy?"

It was super annoying.

But Amy is right, people aren't educated about Cf unless they see a blurb on TV or in Good Housekeeping Magazine or something, which we all know gives a lot of generic generalized info.

 

[wanderlost]

When my son was 10 days old, he developed meningitis, but we didn't know that was what he had at first as it didn't present like normal meningitis, so I had to give my medical history to multitudes of docs, residents and students. The infectious disease team, who ended up taking over my son's care, asked my mother and me multiple times if I was sure I had CF. Finally i spouted off my mutations and they shut up, but it was really annoying. My guess is being at a children's hospital they mainly saw sick children adn I didn't fit into that archetype. Still.

Also, in high school I remember kids saying thingns like "I heard you're going to die soon" or "Don't you have cerebral Palsy?"

It was super annoying.

But Amy is right, people aren't educated about Cf unless they see a blurb on TV or in Good Housekeeping Magazine or something, which we all know gives a lot of generic generalized info.

 

[wanderlost]

When my son was 10 days old, he developed meningitis, but we didn't know that was what he had at first as it didn't present like normal meningitis, so I had to give my medical history to multitudes of docs, residents and students. The infectious disease team, who ended up taking over my son's care, asked my mother and me multiple times if I was sure I had CF. Finally i spouted off my mutations and they shut up, but it was really annoying. My guess is being at a children's hospital they mainly saw sick children adn I didn't fit into that archetype. Still.

Also, in high school I remember kids saying thingns like "I heard you're going to die soon" or "Don't you have cerebral Palsy?"

It was super annoying.

But Amy is right, people aren't educated about Cf unless they see a blurb on TV or in Good Housekeeping Magazine or something, which we all know gives a lot of generic generalized info.