SURVEY

SilviaB · Dec 13, 2010

Hello everyone!
My name is Sílvia and I'm from Spain and thats why my english is awful. Excuse me, please.
I'm writing here because my uncle suffers CF. I know he isn't okay although he's always smiling, trying to seem the happiest person in the world. He is very strong, he is an example to follow!
In my country, there's a very important project you have to do when you finish high school. The topic is free and I have chosen CF in honour to my uncle, because he deserves it. I know how disappointed he gets when he sees that general people in the street don't know anything about his disease and I want to solve it.

That's why I ask you, I almost beg you, to answer this little survey which I need for my project. There aren't many people answering and I can do nothing with the few information I have... You don't have to write a lot, I'll be happy with one or two lines. I thank you with anticipation. Here you have the survey:

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS

Sex:
Current age:
Age in which the first symptoms were noticed:
Nacionality:

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
Pancreas
Liver
Nostrils
Intestine
Sweat glands
Reproductive System
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).

4. Have you had a transplant? Could you tell us how the experience was?

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?

Thank you very much and good luck! <img src="i/expressions/face-icon-small-happy.gif" border="0">.

SilviaB · Dec 13, 2010

Hello everyone!
My name is Sílvia and I'm from Spain and thats why my english is awful. Excuse me, please.
I'm writing here because my uncle suffers CF. I know he isn't okay although he's always smiling, trying to seem the happiest person in the world. He is very strong, he is an example to follow!
In my country, there's a very important project you have to do when you finish high school. The topic is free and I have chosen CF in honour to my uncle, because he deserves it. I know how disappointed he gets when he sees that general people in the street don't know anything about his disease and I want to solve it.

That's why I ask you, I almost beg you, to answer this little survey which I need for my project. There aren't many people answering and I can do nothing with the few information I have... You don't have to write a lot, I'll be happy with one or two lines. I thank you with anticipation. Here you have the survey:

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS

Sex:
Current age:
Age in which the first symptoms were noticed:
Nacionality:

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
Pancreas
Liver
Nostrils
Intestine
Sweat glands
Reproductive System
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).

4. Have you had a transplant? Could you tell us how the experience was?

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?

Thank you very much and good luck! <img src="i/expressions/face-icon-small-happy.gif" border="0">.

SilviaB · Dec 13, 2010

Hello everyone!
 My name is Sílvia and I'm from Spain and thats why my english is awful. Excuse me, please.
 I'm writing here because my uncle suffers CF. I know he isn't okay although he's always smiling, trying to seem the happiest person in the world. He is very strong, he is an example to follow!
 In my country, there's a very important project you have to do when you finish high school. The topic is free and I have chosen CF in honour to my uncle, because he deserves it. I know how disappointed he gets when he sees that general people in the street don't know anything about his disease and I want to solve it.
 
 That's why I ask you, I almost beg you, to answer this little survey which I need for my project. There aren't many people answering and I can do nothing with the few information I have... You don't have to write a lot, I'll be happy with one or two lines. I thank you with anticipation. Here you have the survey:
 
 SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS
 
 Sex:
 Current age:
 Age in which the first symptoms were noticed:
 Nacionality:
 
 1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
 Pancreas
 Liver
 Nostrils
 Intestine
 Sweat glands
 Reproductive System
 Other organs (In this case, which are them?)
 
 2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?
 
 
 3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
 
 
 4. Have you had a transplant? Could you tell us how the experience was?
 
 
 5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
 
 
 6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
 
 Thank you very much and good luck! <img src="i/expressions/face-icon-small-happy.gif" border="0">.

AleksandraKaczynska · Dec 14, 2010

I can olny answere as a parent to a cf child.... hope this will help you - but try making the survey on spanish or european forums - you'll get more answeres.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/cfe/
">http://www.cfww.org/cfe/
</a>

Sex: female
Current age: 33
Age in which the first symptoms were noticed: no symptoms in child - she is 3 years old
Nacionality: polish

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
Pancreas -no
Liver-no
Nostrils-no
Intestine-no
Sweat glands - yes
Reproductive System -no
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?

none other
3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
diet, no kindergarden, inhalations from saline 5% twice day and CPT, additional vitamins, probiotics and omeg3

4. Have you had a transplant? Could you tell us how the experience was?
no transplant

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
Yes... as for us - parents - less contacts with other casual people - no pubs and so on.. big parties...at least alot less. I took up work at home - changed my career plans. We all take care more about our health. Second child was a hard decision - not by chance at all.
Hard to say how it effect Joanna - she is only 3.

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
Yes - Polish Cystic Fibrosis Fund and Matio -
www.ptwm.org.pl/
www.mukowiscydoza.pl/
We also use help from
<a target=_blank class=ftalternatingbarlinklarge href="http://jestesmyok.pl/">http://jestesmyok.pl/</a> and I'm a part of a few forums

Good luck

AleksandraKaczynska · Dec 14, 2010

I can olny answere as a parent to a cf child.... hope this will help you - but try making the survey on spanish or european forums - you'll get more answeres.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/cfe/
">http://www.cfww.org/cfe/
</a>

Sex: female
Current age: 33
Age in which the first symptoms were noticed: no symptoms in child - she is 3 years old
Nacionality: polish

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
Pancreas -no
Liver-no
Nostrils-no
Intestine-no
Sweat glands - yes
Reproductive System -no
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?

none other
3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
diet, no kindergarden, inhalations from saline 5% twice day and CPT, additional vitamins, probiotics and omeg3

4. Have you had a transplant? Could you tell us how the experience was?
no transplant

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
Yes... as for us - parents - less contacts with other casual people - no pubs and so on.. big parties...at least alot less. I took up work at home - changed my career plans. We all take care more about our health. Second child was a hard decision - not by chance at all.
Hard to say how it effect Joanna - she is only 3.

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
Yes - Polish Cystic Fibrosis Fund and Matio -
www.ptwm.org.pl/
www.mukowiscydoza.pl/
We also use help from
<a target=_blank class=ftalternatingbarlinklarge href="http://jestesmyok.pl/">http://jestesmyok.pl/</a> and I'm a part of a few forums

Good luck

AleksandraKaczynska · Dec 14, 2010

I can olny answere as a parent to a cf child.... hope this will help you - but try making the survey on spanish or european forums - you'll get more answeres.
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/cfe/
">http://www.cfww.org/cfe/
</a> 
 
 Sex: female
 Current age: 33
 Age in which the first symptoms were noticed: no symptoms in child - she is 3 years old
 Nacionality: polish
 
 1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
 Pancreas -no
 Liver-no
 Nostrils-no
 Intestine-no
 Sweat glands - yes
 Reproductive System -no
 Other organs (In this case, which are them?)
 
 2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?
 
 none other
 3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
 diet, no kindergarden, inhalations from saline 5% twice day and CPT, additional vitamins, probiotics and omeg3
 
 4. Have you had a transplant? Could you tell us how the experience was?
 no transplant
 
 5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
 Yes... as for us - parents - less contacts with other casual people - no pubs and so on.. big parties...at least alot less. I took up work at home - changed my career plans. We all take care more about our health. Second child was a hard decision - not by chance at all.
 Hard to say how it effect Joanna - she is only 3.
 
 6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
 Yes - Polish Cystic Fibrosis Fund and Matio -
 www.ptwm.org.pl/
 www.mukowiscydoza.pl/
 We also use help from
 <a target=_blank class=ftalternatingbarlinklarge href="http://jestesmyok.pl/">http://jestesmyok.pl/</a> and I'm a part of a few forums
 
 Good luck

hmw · Dec 14, 2010

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS

I will answer questions from the standpoint of my child, who was dx'ed at age 7. Since you posted here as well as in the adults forum, I assume you'd like to hear from us parents as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sex: female
Current age: 9.5
Age in which the first symptoms were noticed: 3
Nacionality: American; European ethnicity

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)
Lungs Yes
Pancreas Yes
Liver No
Nostrils Sinuses- yes
Intestine Yes
Sweat glands Yes
Reproductive System Unknown
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which? No

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
Pills: Pancreatic enzymes (Creon12) to aid in digestion of food, Prevacid for reflux and to help the enzymes work.
Vitamins and other supplements to address deficiencies due to digestive problems caused by cf.
Zithromax 3x/week to help with inflammation.
Diets: In general, a high-calorie diet. In addition, supplemental calories via g-tube (MicKey Button) and feeding pump since normal diet is not enough to support growth and weight gain in her case.
Machines: Inhaled medications (albuterol, pulmacort, Pulmozyme) by nebulizer to keep airways open, reduce inflammation, aid in coughing up mucus. Airway clearance with HillRom vest 2-4x daily.

4. Have you had a transplant? Could you tell us how the experience was? No

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
Frequent illness has resulted in missing a lot of typical activities that we would otherwise take part in, as well as missing a great deal of school. Otherwise, we try to keep her life as normal as possible in this regard (participation on activities such as dance lessons, playing with friends and outings like any other child without undue concerns we wouldn't have for our other children.) But it's hard- CF gets in the way of a lot, when much time is spent on treatments; etc.

6. Are you in any kind of association against cystic fibrosis? Could you tell us which? the <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/">Cystic Fibrosis Foundation</a>

hmw · Dec 14, 2010

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS

I will answer questions from the standpoint of my child, who was dx'ed at age 7. Since you posted here as well as in the adults forum, I assume you'd like to hear from us parents as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sex: female
Current age: 9.5
Age in which the first symptoms were noticed: 3
Nacionality: American; European ethnicity

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)
Lungs Yes
Pancreas Yes
Liver No
Nostrils Sinuses- yes
Intestine Yes
Sweat glands Yes
Reproductive System Unknown
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which? No

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
Pills: Pancreatic enzymes (Creon12) to aid in digestion of food, Prevacid for reflux and to help the enzymes work.
Vitamins and other supplements to address deficiencies due to digestive problems caused by cf.
Zithromax 3x/week to help with inflammation.
Diets: In general, a high-calorie diet. In addition, supplemental calories via g-tube (MicKey Button) and feeding pump since normal diet is not enough to support growth and weight gain in her case.
Machines: Inhaled medications (albuterol, pulmacort, Pulmozyme) by nebulizer to keep airways open, reduce inflammation, aid in coughing up mucus. Airway clearance with HillRom vest 2-4x daily.

4. Have you had a transplant? Could you tell us how the experience was? No

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
Frequent illness has resulted in missing a lot of typical activities that we would otherwise take part in, as well as missing a great deal of school. Otherwise, we try to keep her life as normal as possible in this regard (participation on activities such as dance lessons, playing with friends and outings like any other child without undue concerns we wouldn't have for our other children.) But it's hard- CF gets in the way of a lot, when much time is spent on treatments; etc.

6. Are you in any kind of association against cystic fibrosis? Could you tell us which? the <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/">Cystic Fibrosis Foundation</a>

hmw · Dec 14, 2010

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS
 
 I will answer questions from the standpoint of my child, who was dx'ed at age 7. Since you posted here as well as in the adults forum, I assume you'd like to hear from us parents as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Sex: female
 Current age: 9.5
 Age in which the first symptoms were noticed: 3
 Nacionality: American; European ethnicity
 
 1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)
 Lungs Yes
 Pancreas Yes
 Liver No
 Nostrils Sinuses- yes
 Intestine Yes
 Sweat glands Yes
 Reproductive System Unknown
 Other organs (In this case, which are them?)
 
 2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which? No
 
 3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
 Pills: Pancreatic enzymes (Creon12) to aid in digestion of food, Prevacid for reflux and to help the enzymes work.
 Vitamins and other supplements to address deficiencies due to digestive problems caused by cf.
 Zithromax 3x/week to help with inflammation.
 Diets: In general, a high-calorie diet. In addition, supplemental calories via g-tube (MicKey Button) and feeding pump since normal diet is not enough to support growth and weight gain in her case.
 Machines: Inhaled medications (albuterol, pulmacort, Pulmozyme) by nebulizer to keep airways open, reduce inflammation, aid in coughing up mucus. Airway clearance with HillRom vest 2-4x daily.
 
 
 4. Have you had a transplant? Could you tell us how the experience was? No
 
 
 5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
 Frequent illness has resulted in missing a lot of typical activities that we would otherwise take part in, as well as missing a great deal of school. Otherwise, we try to keep her life as normal as possible in this regard (participation on activities such as dance lessons, playing with friends and outings like any other child without undue concerns we wouldn't have for our other children.) But it's hard- CF gets in the way of a lot, when much time is spent on treatments; etc.
 
 
 6. Are you in any kind of association against cystic fibrosis? Could you tell us which? the <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/">Cystic Fibrosis Foundation</a>

SURVEY

SilviaB

Guest

SilviaB

Guest

SilviaB

Guest

AleksandraKaczynska

New member

AleksandraKaczynska

New member

AleksandraKaczynska

New member

hmw

New member

hmw

New member

hmw

New member