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">.

JustDucky · Dec 13, 2010

Age: 38
Female
Age when first noticed symptoms? Not sure, I have had asthma most of my life, respiratory issues really kicked up in my 20's. I was diagnosed at 33 with CF

Organs affected: Lungs, pancreas (I have DM), and I guess sweat glands

Other diseases as a result? Yes, diabetes. My diabetes is because of my CF, also you could count bronchiectasis because of the thick mucous. Recurring pneumonia, CF is a big part of that as well too. Not sure if my GERD is CF related though and malabsorbing most certainly is from my CF.

Treatment? Yes..daily nebs that include duonebs, pulmicort, HTS, Colistin, and pulmozyme. Vesting, twice daily at least 20 minutes each time. Multivitamins, enzymes, PO antibiotics (azithtromycin) etc...and O2

transplant? No

Has CF affected my social/sex life? Yes....it is hard to plan things at night and around CF in general. It is unpredictable as far as how I feel day to day and flare ups really throws things off. Hard to plan a vacation because I never know when I will get sick. This year,I have been on IV's nearly 4 months cummulative, most of that time spent in hospitals.

Any association against CF? No, but I do participate in fund raising for CF treatments etc...

Hope this helped,
Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky · Dec 13, 2010

Age: 38
Female
Age when first noticed symptoms? Not sure, I have had asthma most of my life, respiratory issues really kicked up in my 20's. I was diagnosed at 33 with CF

Organs affected: Lungs, pancreas (I have DM), and I guess sweat glands

Other diseases as a result? Yes, diabetes. My diabetes is because of my CF, also you could count bronchiectasis because of the thick mucous. Recurring pneumonia, CF is a big part of that as well too. Not sure if my GERD is CF related though and malabsorbing most certainly is from my CF.

Treatment? Yes..daily nebs that include duonebs, pulmicort, HTS, Colistin, and pulmozyme. Vesting, twice daily at least 20 minutes each time. Multivitamins, enzymes, PO antibiotics (azithtromycin) etc...and O2

transplant? No

Has CF affected my social/sex life? Yes....it is hard to plan things at night and around CF in general. It is unpredictable as far as how I feel day to day and flare ups really throws things off. Hard to plan a vacation because I never know when I will get sick. This year,I have been on IV's nearly 4 months cummulative, most of that time spent in hospitals.

Any association against CF? No, but I do participate in fund raising for CF treatments etc...

Hope this helped,
Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky · Dec 13, 2010

Age: 38
 Female
 Age when first noticed symptoms? Not sure, I have had asthma most of my life, respiratory issues really kicked up in my 20's. I was diagnosed at 33 with CF
 
 Organs affected: Lungs, pancreas (I have DM), and I guess sweat glands
 
 Other diseases as a result? Yes, diabetes. My diabetes is because of my CF, also you could count bronchiectasis because of the thick mucous. Recurring pneumonia, CF is a big part of that as well too. Not sure if my GERD is CF related though and malabsorbing most certainly is from my CF.
 
 Treatment? Yes..daily nebs that include duonebs, pulmicort, HTS, Colistin, and pulmozyme. Vesting, twice daily at least 20 minutes each time. Multivitamins, enzymes, PO antibiotics (azithtromycin) etc...and O2
 
 transplant? No
 
 Has CF affected my social/sex life? Yes....it is hard to plan things at night and around CF in general. It is unpredictable as far as how I feel day to day and flare ups really throws things off. Hard to plan a vacation because I never know when I will get sick. This year,I have been on IV's nearly 4 months cummulative, most of that time spent in hospitals.
 
 Any association against CF? No, but I do participate in fund raising for CF treatments etc...
 
 Hope this helped,
 Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

sarabeth87 · Dec 13, 2010

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS

Sex: Female
Current age: 23
Age in which the first symptoms were noticed: Not sure, but I was diagnosed at 18 months. My lung function didn't start declining until I was around 18 years old though.
Nationality: American

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~Yes
Intestine~Yes
Sweat glands~Yes
Reproductive System~Most likely
Other organs (In this case, which are them?) Bones

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

3. Do you follow any kind of treatment? Could you tell us which or why? (pills, diets, machines,... and its brand). 
Vest
Cayston
Tobi
Albuterol
Pulmozyme
Singulair
Zyrtec
Zoloft
AquaDEKS
Zantac
Prilosec
Pancrease MT16

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

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how? 
Yes because so much of what I want to do has to be planned around whether or not I will be able to do my treatments, so that pretty much cuts out things like camping. And then when hanging with friends, who wants to sit down and take breathing treatments? Sexual~My sex life is affected when I'm sick because that causes me to not be in the mood.

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
I help fundraise for the Cystic Fibrosis Foundation.

sarabeth87 · Dec 13, 2010

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS

Sex: Female
Current age: 23
Age in which the first symptoms were noticed: Not sure, but I was diagnosed at 18 months. My lung function didn't start declining until I was around 18 years old though.
Nationality: American

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~Yes
Intestine~Yes
Sweat glands~Yes
Reproductive System~Most likely
Other organs (In this case, which are them?) Bones

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

3. Do you follow any kind of treatment? Could you tell us which or why? (pills, diets, machines,... and its brand). 
Vest
Cayston
Tobi
Albuterol
Pulmozyme
Singulair
Zyrtec
Zoloft
AquaDEKS
Zantac
Prilosec
Pancrease MT16

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

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how? 
Yes because so much of what I want to do has to be planned around whether or not I will be able to do my treatments, so that pretty much cuts out things like camping. And then when hanging with friends, who wants to sit down and take breathing treatments? Sexual~My sex life is affected when I'm sick because that causes me to not be in the mood.

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
I help fundraise for the Cystic Fibrosis Foundation.

sarabeth87 · Dec 13, 2010

SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS
 
 Sex: Female
 Current age: 23
 Age in which the first symptoms were noticed: Not sure, but I was diagnosed at 18 months. My lung function didn't start declining until I was around 18 years old though.
 Nationality: American
 
 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~Yes
 Intestine~Yes
 Sweat glands~Yes
 Reproductive System~Most likely
 Other organs (In this case, which are them?) Bones
 
 2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which? 
 Yes, I have GERD and Osteopenia
 
 3. Do you follow any kind of treatment? Could you tell us which or why? (pills, diets, machines,... and its brand). 
 Vest
 Cayston
 Tobi
 Albuterol
 Pulmozyme
 Singulair
 Zyrtec
 Zoloft
 AquaDEKS
 Zantac
 Prilosec
 Pancrease MT16
 
 4. Have you had a transplant? Could you tell us how the experience was? 
 N/A
 
 5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how? 
 Yes because so much of what I want to do has to be planned around whether or not I will be able to do my treatments, so that pretty much cuts out things like camping. And then when hanging with friends, who wants to sit down and take breathing treatments? Sexual~My sex life is affected when I'm sick because that causes me to not be in the mood.
 
 6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
 I help fundraise for the Cystic Fibrosis Foundation.

SilviaB · Dec 13, 2010

Thank you very much for answering! It was really helpful! <img src="i/expressions/face-icon-small-smile.gif" border="0">

SilviaB · Dec 13, 2010

Thank you very much for answering! It was really helpful! <img src="i/expressions/face-icon-small-smile.gif" border="0">

SilviaB · Dec 13, 2010

Thank you very much for answering! It was really helpful! <img src="i/expressions/face-icon-small-smile.gif" border="0">

KLeigh · Dec 14, 2010

Sex: Female
Current age: 25
Age in which the first symptoms were noticed: Birth
Nacionality: Sicilian/American

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
Nostrils
Intestine
Sweat glands YES
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?
yes, APBA

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
-2-3x daily nebulized Albuterol
-2x daily nebulized antibodics (ie. TOBI or Cayston)
-Nexium 1 daily
-Zithromax 1 Monday Wednes & Friday
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?
-Yes, I can't go to smokey places without having an asthma attack.
-You constantly have to evaluate your life & how everything will effect you & your disease
-treatments take up about 2-3 hours of each day

6. Are you in any kind of association against cystic fibrosis? Could you tell us which? NO

KLeigh · Dec 14, 2010

Sex: Female
Current age: 25
Age in which the first symptoms were noticed: Birth
Nacionality: Sicilian/American

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
Nostrils
Intestine
Sweat glands YES
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?
yes, APBA

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
-2-3x daily nebulized Albuterol
-2x daily nebulized antibodics (ie. TOBI or Cayston)
-Nexium 1 daily
-Zithromax 1 Monday Wednes & Friday
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?
-Yes, I can't go to smokey places without having an asthma attack.
-You constantly have to evaluate your life & how everything will effect you & your disease
-treatments take up about 2-3 hours of each day

6. Are you in any kind of association against cystic fibrosis? Could you tell us which? NO

KLeigh · Dec 14, 2010

Sex: Female
 Current age: 25
 Age in which the first symptoms were noticed: Birth
 Nacionality: Sicilian/American
 
 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
 Nostrils
 Intestine
 Sweat glands YES
 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?
 yes, APBA
 
 3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
 -2-3x daily nebulized Albuterol
 -2x daily nebulized antibodics (ie. TOBI or Cayston)
 -Nexium 1 daily
 -Zithromax 1 Monday Wednes & Friday
 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?
 -Yes, I can't go to smokey places without having an asthma attack.
 -You constantly have to evaluate your life & how everything will effect you & your disease
 -treatments take up about 2-3 hours of each day
 
 6. Are you in any kind of association against cystic fibrosis? Could you tell us which? NO

SilviaB · Dec 14, 2010

Thanks for your answer! Have a lovely christmas <img src="i/expressions/face-icon-small-happy.gif" border="0">

SilviaB · Dec 14, 2010

Thanks for your answer! Have a lovely christmas <img src="i/expressions/face-icon-small-happy.gif" border="0">

SilviaB · Dec 14, 2010

Thanks for your answer! Have a lovely christmas <img src="i/expressions/face-icon-small-happy.gif" border="0">

MissRagdoll · Dec 15, 2010

Sex: female
Current age: 18
Age in which the first symptoms were noticed: at birth
Nacionality: American

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
Pancreas Yes
Liver No
Nostrils Yes
Intestine No
Sweat glands Yes
Reproductive System Probably
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?
Osteopenia, asthma, and sinus disease

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
Vest with Tobi, Albuterol, Pulmozyme. Pills: Singulair, Zyrtec, Azithromycin, and Creon MT 20s.

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?
Yes, when im not feeling well I dont feel up to doing much of anything but sleep. I cant go to peoples houses where they smoke, or anywhere where there may be smoke.I need to take more breaks during strenuous work.

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

No

MissRagdoll · Dec 15, 2010

Sex: female
Current age: 18
Age in which the first symptoms were noticed: at birth
Nacionality: American

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
Pancreas Yes
Liver No
Nostrils Yes
Intestine No
Sweat glands Yes
Reproductive System Probably
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?
Osteopenia, asthma, and sinus disease

3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
Vest with Tobi, Albuterol, Pulmozyme. Pills: Singulair, Zyrtec, Azithromycin, and Creon MT 20s.

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?
Yes, when im not feeling well I dont feel up to doing much of anything but sleep. I cant go to peoples houses where they smoke, or anywhere where there may be smoke.I need to take more breaks during strenuous work.

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

No

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