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HI everyone!! I am new here
- Thread starter jbmagik2
- Start date
SaraPAstudent
New member
Hi all, I am new here. I'm actually a Physician Assistant 1st year student studying CF at the present time and I was wondering if anyone could answer this question for me...upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well?
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
SaraPAstudent
New member
Hi all, I am new here. I'm actually a Physician Assistant 1st year student studying CF at the present time and I was wondering if anyone could answer this question for me...upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well?
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
SaraPAstudent
New member
Hi all, I am new here. I'm actually a Physician Assistant 1st year student studying CF at the present time and I was wondering if anyone could answer this question for me...upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well?
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
SaraPAstudent
New member
Hi all, I am new here. I'm actually a Physician Assistant 1st year student studying CF at the present time and I was wondering if anyone could answer this question for me...upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well?
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
thank you. This website is moving, and I'm so amazed at the love and support this site offers.
SaraPAstudent
New member
Hi all, I am new here. I'm actually a Physician Assistant 1st year student studying CF at the present time and I was wondering if anyone could answer this question for me...upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well?
<br />
<br />thank you. This website is moving, and I'm so amazed at the love and support this site offers.
<br />
<br />thank you. This website is moving, and I'm so amazed at the love and support this site offers.
Hi Sara: here's your answers:
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
Hi Sara: here's your answers:
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
Hi Sara: here's your answers:
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
Hi Sara: here's your answers:
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
<b>
upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
Hi Sara: here's your answers:
<br /><b>
<br />upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
<br />
<br />The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
<br />
<br />
<br />Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
<br />
<br />Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
<br />
<br />Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen
<br /><b>
<br />upon receiving that initial diagnosis, what kind of support and education did the medical staff offer to you aka did they hand out pamphlets, did they put you in touch with support groups, or did they personally take the time to discuss CF to answer any and all of your questions? <b>
<br />
<br />The initial diagnosis was a phone call saying I had the CF gene and I needed to send my hubby in to get tested. That's it. Then, I think as a normal procedure, they sent us to a genetic counselor who gave us info on CF and what to expect if the baby had it...she was helpful but defintely not someone who gave us anyy comfort at all..it was actaully very stressful..but that could have been me b/c of being preganant and scared sh...less!!!
<br />
<br />
<br />Or perhaps they did all of the above, or maybe none at all. In any case, could anyone tell me the steps they took towards education and support for not just those with the disease, but the family and friends involved as well? </b>
<br />
<br />Like I said above, she just went over with us how we were possible genetic carriers, asked our family historyy,. if we knew anyone was a carrier (we did not) and then gave us some phone #'s and a pamphlet. That's it.
<br />
<br />Hope that helps! Keep in mind this is Florida and I was on medicaid b/c of low income...feel free to ask me anything else if need. thanks! jen