Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Grace, do you have a DX? If you do you won't be turned down. If you don't have a DX they will phone interview you to decide to put you in. I haven't heard of anyone being turned down yet. If you have your email or phone call in, now you wait. They seem to be a bit overwhelmed by so many applying at once, but they will get to everyone. Having that new person starting on Sept 1 will help things move more quickly, but right now the Dr are doing it all their selves and seeing patients all day. Let us know when you here, OK? Cindylouwho Very Nervous I have this feeling that I will not be picked for the EDS Studies. I don't know why, but I do. Nothing ever good happens in my family. We have always struggles and fought for anything we have. We fight every payday to get the bills paid. The only good thing that has ever happened in my life where my husband and children. I guess that should be enough, but for once I'd like to have something good happen. Being in the Study would mean the world to myself and my family. It might open so many new doors for health care. Maybe I'm just feeling sorry for myself. I'm tired too so maybe that is it as well. Sorry for rambling on. I do want to say Congratulations to everyone that does get excepted! No hard feelings from me! You all deserve this!!! ) BIG HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Grace, You don't need a diagnosis, you just need to call them and answer the questions over the phone. They will tell you if you are accepted right over the phone, and talk about dates. That is if you can get through - many have been calling, I assume. Anyway, there is no reason you shouldn't be accepted, and you may want to take another family member with you. They told Cindy they could have done her at the same time as Dylan. Love Lana > I have this feeling that I will not be picked for the EDS Studies. I don't know why, but I do. Nothing ever good happens in my family. We have always struggles and fought for anything we have. We fight every payday to get the bills paid. The only good thing that has ever happened in my life where my husband and children. I guess that should be enough, but for once I'd like to have something good happen. Being in the Study would mean the world to myself and my family. It might open so many new doors for health care. Maybe I'm just feeling sorry for myself. I'm tired too so maybe that is it as well. Sorry for rambling on. I do want to say Congratulations to everyone that does get excepted! No hard feelings from me! You all deserve this!!! ) > > BIG HUGGLES, > Grace > > EDS, It's a Life Thing > http://www.ehlersdanlos.ca/whateds.htm > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Grace, If you have trouble reaching NIH about the study by phone, you can apply by email. Allow them a few days to call you back because they are swamped with new inquiries. I honestly think I only got called so quickly because they were rushing to fit Dad in while he is there this week and they needed some information about him and couldn't reach him on the road. They called me for his address, phone, etc. and then while I was already on the phone they got me into the study. I initially applied by email. Here is the information they asked me to send: If you are interested in participating in our study, please write to: mcdonnellna@.... Include the following in your email: * Home Address and phone number * Cell phone number * Emergency Contact information * Date of Birth * Social Security Number * Current height and weight * Special needs in terms of diet and ambulation. * If you have metal parts in your body that could interfere with the MRI Good luck! -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 I already applied by email last week. It's the waiting for the call back. They said they would call me this week. And wouldn't you know it today after 3 and all day tomorrow I WONT BE HOME!!!!!.....lol So if they call, I'll miss it. ( I want to see if they will do my oldest son with me. I really want my youngest done too, but I don't think he could handle that right now. It would be really hard on him mentally. HUGGLES Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Re: Very Nervous Grace, You don't need a diagnosis, you just need to call them and answer the questions over the phone. They will tell you if you are accepted right over the phone, and talk about dates. That is if you can get through - many have been calling, I assume. Anyway, there is no reason you shouldn't be accepted, and you may want to take another family member with you. They told Cindy they could have done her at the same time as Dylan. Love Lana > I have this feeling that I will not be picked for the EDS Studies. I don't know why, but I do. Nothing ever good happens in my family. We have always struggles and fought for anything we have. We fight every payday to get the bills paid. The only good thing that has ever happened in my life where my husband and children. I guess that should be enough, but for once I'd like to have something good happen. Being in the Study would mean the world to myself and my family. It might open so many new doors for health care. Maybe I'm just feeling sorry for myself. I'm tired too so maybe that is it as well. Sorry for rambling on. I do want to say Congratulations to everyone that does get excepted! No hard feelings from me! You all deserve this!!! ) > > BIG HUGGLES, > Grace > > EDS, It's a Life Thing > http://www.ehlersdanlos.ca/whateds.htm > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 I already emailed them. It's the waiting that's a killer.....lol I'm not going to be home after 3pm today and all day tomorrow. I bet that is when they will call. I'll miss it. ( ....lol HUGGLES Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Re: Re: Very Nervous Grace, If you have trouble reaching NIH about the study by phone, you can apply by email. Allow them a few days to call you back because they are swamped with new inquiries. I honestly think I only got called so quickly because they were rushing to fit Dad in while he is there this week and they needed some information about him and couldn't reach him on the road. They called me for his address, phone, etc. and then while I was already on the phone they got me into the study. I initially applied by email. Here is the information they asked me to send: If you are interested in participating in our study, please write to: mcdonnellna@.... Include the following in your email: * Home Address and phone number * Cell phone number * Emergency Contact information * Date of Birth * Social Security Number * Current height and weight * Special needs in terms of diet and ambulation. * If you have metal parts in your body that could interfere with the MRI Good luck! -Barb To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Yes I have Dr. Nazli's email. Or at least this is what I have...... mcdonnellna@... . I will email her to let her know about me not being home this afternoon and tomorrow. Thanks for the idea!!! HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Re: Very Nervous Grace, you may try calling them again, just to let them know you won't be available, and that they said they would call - or you could send them an email as well, telling them which day you would be available for calls? Do you have Dr. Nazli's email address? Cindy or I can share that if you don't have it. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Yes I have Dr. Nazli's email. Or at least this is what I have...... mcdonnellna@... . I will email her to let her know about me not being home this afternoon and tomorrow. Thanks for the idea!!! HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Re: Very Nervous Grace, you may try calling them again, just to let them know you won't be available, and that they said they would call - or you could send them an email as well, telling them which day you would be available for calls? Do you have Dr. Nazli's email address? Cindy or I can share that if you don't have it. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Yes I have Dr. Nazli's email. Or at least this is what I have...... mcdonnellna@... . I will email her to let her know about me not being home this afternoon and tomorrow. Thanks for the idea!!! HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Re: Very Nervous Grace, you may try calling them again, just to let them know you won't be available, and that they said they would call - or you could send them an email as well, telling them which day you would be available for calls? Do you have Dr. Nazli's email address? Cindy or I can share that if you don't have it. Love Lana Quote Link to comment Share on other sites More sharing options...
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