Question about Diagnosis

O

Onederfulmakr

New member
Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, and although it was wonderful to finally "know", it was still hard to deal with, especially when i didnt feel well. I am a mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to, even if it was just on email. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. And i have to add that the Doctors in my adult clinic were not necessasarily nice or understanding to me during the diagnosis process. It would have been very helpful though. SO, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf
 
O

Onederfulmakr

New member
Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, and although it was wonderful to finally "know", it was still hard to deal with, especially when i didnt feel well. I am a mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to, even if it was just on email. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. And i have to add that the Doctors in my adult clinic were not necessasarily nice or understanding to me during the diagnosis process. It would have been very helpful though. SO, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf
 
O

Onederfulmakr

New member
Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, and although it was wonderful to finally "know", it was still hard to deal with, especially when i didnt feel well. I am a mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to, even if it was just on email. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. And i have to add that the Doctors in my adult clinic were not necessasarily nice or understanding to me during the diagnosis process. It would have been very helpful though. SO, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf
 
O

Onederfulmakr

New member
Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
Although i had been sick my whole life and missed many years of school and lots of hospital visits, and although it was wonderful to finally "know", it was still hard to deal with, especially when i didnt feel well. I am a mild case compared to many but i know the mental process you go through after diagnosis is very similar.
SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to, even if it was just on email. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. And i have to add that the Doctors in my adult clinic were not necessasarily nice or understanding to me during the diagnosis process. It would have been very helpful though. SO, anything that you wish the center would offer or could have done differently in your adult dignosis?

thank you so much for your help. My hopes are someday to fix what is missing.
i wish you all the best.. and good health!
-Anna, 22 w/cf
 
O

Onederfulmakr

New member
Hello everyone! Although i have never written on the Forum i have been reading it for a few years now. My name is Anna, im 22 and i was diagnosed with cf 2 years ago.
<br />I am working on finishing up my degree in Public Health and I have decided to plan a program for Adults recently diagnosed with cf. Although i wont actually implement it, (at least not yet) it is something that i think about often.
<br />Although i had been sick my whole life and missed many years of school and lots of hospital visits, and although it was wonderful to finally "know", it was still hard to deal with, especially when i didnt feel well. I am a mild case compared to many but i know the mental process you go through after diagnosis is very similar.
<br />SO, i wanted to ask you all.. Is there anything that you wish the care center or your Dr.'s would have done differently when you were diagnosed. For example, i could have really enjoyed having a group of people who were also diagnosed to talk to, even if it was just on email. Also, all my social worker did was make sure i had resources, no one really offered any emotional support, especially for a 20 yr. old. And i have to add that the Doctors in my adult clinic were not necessasarily nice or understanding to me during the diagnosis process. It would have been very helpful though. SO, anything that you wish the center would offer or could have done differently in your adult dignosis?
<br />
<br />thank you so much for your help. My hopes are someday to fix what is missing.
<br />i wish you all the best.. and good health!
<br />-Anna, 22 w/cf
 
M

Mommafirst

Guest
Hi Anna,

I think the idea of building a program that hospitals or CF centers can implement upon adult CF diagnoses is a terrific idea. My experience is with a newborn diagnosed, but with all the new information that has been building over time, I believe your experience of getting an adult diagnosis will not be unique or novel. Most of the doctors and CF specialists are not particularly familiar with the process of diagnosing an adult and I can certainly see where your thoughts, feelings and needs weren't really addressed, because you aren't a newborn or a child and you have been living with this disease namelessly for all your life.

I wish I could be of more help. I want to applaud your effort, though. You might seek out participation on a family council at your CF center. I am a member of the Family Council at ours and we are a group of parents and adult CF patients who meet monthly to help advise the center on our needs. We are all becoming certified mentors so that when a new patient is diagnosed, they will be assigned a mentor who has been there and done that -- and provide help in terms of informational support. Some of the adult patients on our council might be the kind of experts you could use.

Best of luck.
 
M

Mommafirst

Guest
Hi Anna,

I think the idea of building a program that hospitals or CF centers can implement upon adult CF diagnoses is a terrific idea. My experience is with a newborn diagnosed, but with all the new information that has been building over time, I believe your experience of getting an adult diagnosis will not be unique or novel. Most of the doctors and CF specialists are not particularly familiar with the process of diagnosing an adult and I can certainly see where your thoughts, feelings and needs weren't really addressed, because you aren't a newborn or a child and you have been living with this disease namelessly for all your life.

I wish I could be of more help. I want to applaud your effort, though. You might seek out participation on a family council at your CF center. I am a member of the Family Council at ours and we are a group of parents and adult CF patients who meet monthly to help advise the center on our needs. We are all becoming certified mentors so that when a new patient is diagnosed, they will be assigned a mentor who has been there and done that -- and provide help in terms of informational support. Some of the adult patients on our council might be the kind of experts you could use.

Best of luck.
 
M

Mommafirst

Guest
Hi Anna,

I think the idea of building a program that hospitals or CF centers can implement upon adult CF diagnoses is a terrific idea. My experience is with a newborn diagnosed, but with all the new information that has been building over time, I believe your experience of getting an adult diagnosis will not be unique or novel. Most of the doctors and CF specialists are not particularly familiar with the process of diagnosing an adult and I can certainly see where your thoughts, feelings and needs weren't really addressed, because you aren't a newborn or a child and you have been living with this disease namelessly for all your life.

I wish I could be of more help. I want to applaud your effort, though. You might seek out participation on a family council at your CF center. I am a member of the Family Council at ours and we are a group of parents and adult CF patients who meet monthly to help advise the center on our needs. We are all becoming certified mentors so that when a new patient is diagnosed, they will be assigned a mentor who has been there and done that -- and provide help in terms of informational support. Some of the adult patients on our council might be the kind of experts you could use.

Best of luck.
 
M

Mommafirst

Guest
Hi Anna,

I think the idea of building a program that hospitals or CF centers can implement upon adult CF diagnoses is a terrific idea. My experience is with a newborn diagnosed, but with all the new information that has been building over time, I believe your experience of getting an adult diagnosis will not be unique or novel. Most of the doctors and CF specialists are not particularly familiar with the process of diagnosing an adult and I can certainly see where your thoughts, feelings and needs weren't really addressed, because you aren't a newborn or a child and you have been living with this disease namelessly for all your life.

I wish I could be of more help. I want to applaud your effort, though. You might seek out participation on a family council at your CF center. I am a member of the Family Council at ours and we are a group of parents and adult CF patients who meet monthly to help advise the center on our needs. We are all becoming certified mentors so that when a new patient is diagnosed, they will be assigned a mentor who has been there and done that -- and provide help in terms of informational support. Some of the adult patients on our council might be the kind of experts you could use.

Best of luck.
 
M

Mommafirst

Guest
Hi Anna,
<br />
<br />I think the idea of building a program that hospitals or CF centers can implement upon adult CF diagnoses is a terrific idea. My experience is with a newborn diagnosed, but with all the new information that has been building over time, I believe your experience of getting an adult diagnosis will not be unique or novel. Most of the doctors and CF specialists are not particularly familiar with the process of diagnosing an adult and I can certainly see where your thoughts, feelings and needs weren't really addressed, because you aren't a newborn or a child and you have been living with this disease namelessly for all your life.
<br />
<br />I wish I could be of more help. I want to applaud your effort, though. You might seek out participation on a family council at your CF center. I am a member of the Family Council at ours and we are a group of parents and adult CF patients who meet monthly to help advise the center on our needs. We are all becoming certified mentors so that when a new patient is diagnosed, they will be assigned a mentor who has been there and done that -- and provide help in terms of informational support. Some of the adult patients on our council might be the kind of experts you could use.
<br />
<br />Best of luck.
 
J

JazzysMom

New member
The CF Community is very behind on addressing the needs of CF Adults no matter when their diagnosis. Some progress has been made, but IMHO not enough.

I applaud you in your abition to help in that area. There are so many things that the "healthy" person takes for granted that are such obstacles for us. Everything from college, employement to parenting & life insurance.

I was diagnosed when I was 7 so my rude awakening wasnt as abrupt as some of you who had an adult diagnosis. We have quite a few members who were diagnosed as adults tho so I hope they can give you more insight!

Good Luck!
 
J

JazzysMom

New member
The CF Community is very behind on addressing the needs of CF Adults no matter when their diagnosis. Some progress has been made, but IMHO not enough.

I applaud you in your abition to help in that area. There are so many things that the "healthy" person takes for granted that are such obstacles for us. Everything from college, employement to parenting & life insurance.

I was diagnosed when I was 7 so my rude awakening wasnt as abrupt as some of you who had an adult diagnosis. We have quite a few members who were diagnosed as adults tho so I hope they can give you more insight!

Good Luck!
 
J

JazzysMom

New member
The CF Community is very behind on addressing the needs of CF Adults no matter when their diagnosis. Some progress has been made, but IMHO not enough.

I applaud you in your abition to help in that area. There are so many things that the "healthy" person takes for granted that are such obstacles for us. Everything from college, employement to parenting & life insurance.

I was diagnosed when I was 7 so my rude awakening wasnt as abrupt as some of you who had an adult diagnosis. We have quite a few members who were diagnosed as adults tho so I hope they can give you more insight!

Good Luck!
 
J

JazzysMom

New member
The CF Community is very behind on addressing the needs of CF Adults no matter when their diagnosis. Some progress has been made, but IMHO not enough.

I applaud you in your abition to help in that area. There are so many things that the "healthy" person takes for granted that are such obstacles for us. Everything from college, employement to parenting & life insurance.

I was diagnosed when I was 7 so my rude awakening wasnt as abrupt as some of you who had an adult diagnosis. We have quite a few members who were diagnosed as adults tho so I hope they can give you more insight!

Good Luck!
 
J

JazzysMom

New member
The CF Community is very behind on addressing the needs of CF Adults no matter when their diagnosis. Some progress has been made, but IMHO not enough.
<br />
<br />I applaud you in your abition to help in that area. There are so many things that the "healthy" person takes for granted that are such obstacles for us. Everything from college, employement to parenting & life insurance.
<br />
<br />I was diagnosed when I was 7 so my rude awakening wasnt as abrupt as some of you who had an adult diagnosis. We have quite a few members who were diagnosed as adults tho so I hope they can give you more insight!
<br />
<br />Good Luck!
 
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