Survey

C

claire2nd

New member
hey,
i'm in NUI Maynooth, a university in Ireland.
i'm 20 years old, and have been going out with my boyfriend for 3 and a half years. both him and his little sister have CF, so my interest has been growing in knowing about it. i have decided to base my final year health geography project on the accessibility to health care services, and comparing Ireland and the USA. i will be focusing on California mainly.( is this the right choice-is there a certain part of the states that would have better facilities?)

i think it's wrong that there are inequalities in terms of access to facilities and services, and i feel strongly about this project.

i would be so so very greatful if anyone would pretty please fill out this survey, it is totally confidential, i do not need your name, and email it back to me at : marieclaireegan@nuim.ie

Thanks so so much. x

1. Gender
2. Age
3. years you have known you had C.F.
4. Location( just has to be general..ie what State?)
5. Distance from nearest hospital with CF facilities (approximately)
6. On average how often do you avail of these facilities annually?
7. Are you happy with the services offered?
8. Do you feel there is anything that could be improved?
9. is information readily available to you?
10. do you feel that people are aware of CF in general?
11. (If you are in School/ Work) is CF taken into consideration?
12. Do you feel that there is inequality in terms of access to specialised CF health facilities?
 
C

claire2nd

New member
hey,
i'm in NUI Maynooth, a university in Ireland.
i'm 20 years old, and have been going out with my boyfriend for 3 and a half years. both him and his little sister have CF, so my interest has been growing in knowing about it. i have decided to base my final year health geography project on the accessibility to health care services, and comparing Ireland and the USA. i will be focusing on California mainly.( is this the right choice-is there a certain part of the states that would have better facilities?)

i think it's wrong that there are inequalities in terms of access to facilities and services, and i feel strongly about this project.

i would be so so very greatful if anyone would pretty please fill out this survey, it is totally confidential, i do not need your name, and email it back to me at : marieclaireegan@nuim.ie

Thanks so so much. x

1. Gender
2. Age
3. years you have known you had C.F.
4. Location( just has to be general..ie what State?)
5. Distance from nearest hospital with CF facilities (approximately)
6. On average how often do you avail of these facilities annually?
7. Are you happy with the services offered?
8. Do you feel there is anything that could be improved?
9. is information readily available to you?
10. do you feel that people are aware of CF in general?
11. (If you are in School/ Work) is CF taken into consideration?
12. Do you feel that there is inequality in terms of access to specialised CF health facilities?
 
C

claire2nd

New member
hey,
i'm in NUI Maynooth, a university in Ireland.
i'm 20 years old, and have been going out with my boyfriend for 3 and a half years. both him and his little sister have CF, so my interest has been growing in knowing about it. i have decided to base my final year health geography project on the accessibility to health care services, and comparing Ireland and the USA. i will be focusing on California mainly.( is this the right choice-is there a certain part of the states that would have better facilities?)

i think it's wrong that there are inequalities in terms of access to facilities and services, and i feel strongly about this project.

i would be so so very greatful if anyone would pretty please fill out this survey, it is totally confidential, i do not need your name, and email it back to me at : marieclaireegan@nuim.ie

Thanks so so much. x

1. Gender
2. Age
3. years you have known you had C.F.
4. Location( just has to be general..ie what State?)
5. Distance from nearest hospital with CF facilities (approximately)
6. On average how often do you avail of these facilities annually?
7. Are you happy with the services offered?
8. Do you feel there is anything that could be improved?
9. is information readily available to you?
10. do you feel that people are aware of CF in general?
11. (If you are in School/ Work) is CF taken into consideration?
12. Do you feel that there is inequality in terms of access to specialised CF health facilities?
 
R

robert321

New member
hey i'll forget to email it too you so i'll just answer here i hope that is ok with you...

i'm a guy
16
2
north texas
about an hour
every quarter
very happy
the slipshot record keeping
yes
heck no
yes and finally...
yes
 
R

robert321

New member
hey i'll forget to email it too you so i'll just answer here i hope that is ok with you...

i'm a guy
16
2
north texas
about an hour
every quarter
very happy
the slipshot record keeping
yes
heck no
yes and finally...
yes
 
R

robert321

New member
hey i'll forget to email it too you so i'll just answer here i hope that is ok with you...

i'm a guy
16
2
north texas
about an hour
every quarter
very happy
the slipshot record keeping
yes
heck no
yes and finally...
yes
 
P

PrincessNatalie8

New member
1. FEMALE
2. 16
3. 14
4. ENGLAND
5. ABOUT 30MINS ON A BUS OR IN CAR
6. I DONT UNDERSTAND...
7. YUP
8. NOPE
9. YUP
10. NOT PPL LIKE AT SCHOOL LIKE MY FRIENDS DONT KNOW HOW SERIOUS IT IS .. NOT ONE BIT
11. NO ITS NOT
12. HUH? SORRY IM DUMB :-S
 
P

PrincessNatalie8

New member
1. FEMALE
2. 16
3. 14
4. ENGLAND
5. ABOUT 30MINS ON A BUS OR IN CAR
6. I DONT UNDERSTAND...
7. YUP
8. NOPE
9. YUP
10. NOT PPL LIKE AT SCHOOL LIKE MY FRIENDS DONT KNOW HOW SERIOUS IT IS .. NOT ONE BIT
11. NO ITS NOT
12. HUH? SORRY IM DUMB :-S
 
P

PrincessNatalie8

New member
1. FEMALE
2. 16
3. 14
4. ENGLAND
5. ABOUT 30MINS ON A BUS OR IN CAR
6. I DONT UNDERSTAND...
7. YUP
8. NOPE
9. YUP
10. NOT PPL LIKE AT SCHOOL LIKE MY FRIENDS DONT KNOW HOW SERIOUS IT IS .. NOT ONE BIT
11. NO ITS NOT
12. HUH? SORRY IM DUMB :-S
 
E

Emily65Roses

New member
I tried to email you and it said the address was invalid, so here's mine:

<b>1. Gender</b>
Female.
<b>2. Age</b>
23.
<b>3. years you have known you had C.F.</b>
I was diagnosed when I was 2 days old (meconium ileus), so 23 years.
<b>4. Location( just has to be general..ie what State?) </b>
Connecticut.
<b>5. Distance from nearest hospital with CF facilities (approximately)</b>
About 45 minutes. I go to Yale (which has both a children and adult CF
center, thankfully).
<b>6. On average how often do you avail of these facilities annually?</b>
Assuming nothing is wrong with my health, every 3 months. So 4 times a
year.
<b>7. Are you happy with the services offered?</b>
Yes.
<b>8. Do you feel there is anything that could be improved?</b>
I'm sure there is, but nothing I need as of now. Only thing I can think
of (that I'll be looking into in the future) is that the hospital my CF
clinic is in does not currently do lung transplants (they do some
lesser ones like livers and kidneys). If I had the ideal, I'd prefer to stay
at Yale for my lung transplant, but I don't currently have that option.
<b>9. is information readily available to you?</b>
Yes.
<b>10. do you feel that people are aware of CF in general?</b>
In general, not at all. I'm sure they are more than when I was a child
(I was born in 1984), but it's still pretty unknown as a whole.
<b>11. (If you are in School/ Work) is CF taken into consideration?</b>
I can't very well ignore it. I try to make my school schedule so that I
only go to class 2-3 days a week, so I have extra time to rest. As I am
a student, I do not currently work. I will work when I'm done with
school (though it may only be part time, depending on my health when I
graduate).
<b>12. Do you feel that there is inequality in terms of access to
specialised CF health facilities?</b>
The one thing I'd mention that needs more work are adult CF centers.
CFers are only living to adulthood as of recently... but having said
that, we ARE living to adulthood. Children are paid a lot more attention in
just about every field of CF research and care than adults, and we
matter too. Just because we're older, and sicker, and damage is done,
doesn't mean we aren't worth the effort. If they put in more effort, we may
be able to live even longer than we currently are. CF is not solely a
childhood disease anymore.

If it helps you any, you may use my name. I don't care in the
slightest. I'm Emily.
 
E

Emily65Roses

New member
I tried to email you and it said the address was invalid, so here's mine:

<b>1. Gender</b>
Female.
<b>2. Age</b>
23.
<b>3. years you have known you had C.F.</b>
I was diagnosed when I was 2 days old (meconium ileus), so 23 years.
<b>4. Location( just has to be general..ie what State?) </b>
Connecticut.
<b>5. Distance from nearest hospital with CF facilities (approximately)</b>
About 45 minutes. I go to Yale (which has both a children and adult CF
center, thankfully).
<b>6. On average how often do you avail of these facilities annually?</b>
Assuming nothing is wrong with my health, every 3 months. So 4 times a
year.
<b>7. Are you happy with the services offered?</b>
Yes.
<b>8. Do you feel there is anything that could be improved?</b>
I'm sure there is, but nothing I need as of now. Only thing I can think
of (that I'll be looking into in the future) is that the hospital my CF
clinic is in does not currently do lung transplants (they do some
lesser ones like livers and kidneys). If I had the ideal, I'd prefer to stay
at Yale for my lung transplant, but I don't currently have that option.
<b>9. is information readily available to you?</b>
Yes.
<b>10. do you feel that people are aware of CF in general?</b>
In general, not at all. I'm sure they are more than when I was a child
(I was born in 1984), but it's still pretty unknown as a whole.
<b>11. (If you are in School/ Work) is CF taken into consideration?</b>
I can't very well ignore it. I try to make my school schedule so that I
only go to class 2-3 days a week, so I have extra time to rest. As I am
a student, I do not currently work. I will work when I'm done with
school (though it may only be part time, depending on my health when I
graduate).
<b>12. Do you feel that there is inequality in terms of access to
specialised CF health facilities?</b>
The one thing I'd mention that needs more work are adult CF centers.
CFers are only living to adulthood as of recently... but having said
that, we ARE living to adulthood. Children are paid a lot more attention in
just about every field of CF research and care than adults, and we
matter too. Just because we're older, and sicker, and damage is done,
doesn't mean we aren't worth the effort. If they put in more effort, we may
be able to live even longer than we currently are. CF is not solely a
childhood disease anymore.

If it helps you any, you may use my name. I don't care in the
slightest. I'm Emily.
 
E

Emily65Roses

New member
I tried to email you and it said the address was invalid, so here's mine:

<b>1. Gender</b>
Female.
<b>2. Age</b>
23.
<b>3. years you have known you had C.F.</b>
I was diagnosed when I was 2 days old (meconium ileus), so 23 years.
<b>4. Location( just has to be general..ie what State?) </b>
Connecticut.
<b>5. Distance from nearest hospital with CF facilities (approximately)</b>
About 45 minutes. I go to Yale (which has both a children and adult CF
center, thankfully).
<b>6. On average how often do you avail of these facilities annually?</b>
Assuming nothing is wrong with my health, every 3 months. So 4 times a
year.
<b>7. Are you happy with the services offered?</b>
Yes.
<b>8. Do you feel there is anything that could be improved?</b>
I'm sure there is, but nothing I need as of now. Only thing I can think
of (that I'll be looking into in the future) is that the hospital my CF
clinic is in does not currently do lung transplants (they do some
lesser ones like livers and kidneys). If I had the ideal, I'd prefer to stay
at Yale for my lung transplant, but I don't currently have that option.
<b>9. is information readily available to you?</b>
Yes.
<b>10. do you feel that people are aware of CF in general?</b>
In general, not at all. I'm sure they are more than when I was a child
(I was born in 1984), but it's still pretty unknown as a whole.
<b>11. (If you are in School/ Work) is CF taken into consideration?</b>
I can't very well ignore it. I try to make my school schedule so that I
only go to class 2-3 days a week, so I have extra time to rest. As I am
a student, I do not currently work. I will work when I'm done with
school (though it may only be part time, depending on my health when I
graduate).
<b>12. Do you feel that there is inequality in terms of access to
specialised CF health facilities?</b>
The one thing I'd mention that needs more work are adult CF centers.
CFers are only living to adulthood as of recently... but having said
that, we ARE living to adulthood. Children are paid a lot more attention in
just about every field of CF research and care than adults, and we
matter too. Just because we're older, and sicker, and damage is done,
doesn't mean we aren't worth the effort. If they put in more effort, we may
be able to live even longer than we currently are. CF is not solely a
childhood disease anymore.

If it helps you any, you may use my name. I don't care in the
slightest. I'm Emily.
 
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