Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Re: NIH Update/Bonnie > > > > , > > > > I don't know the answer, but I didn't see the first email you sent out. > The > > slow growth might be that you are deficient of a specific collagen, most > > likely one that is prevalent in the skin. I was positive for vascular > type and > > they never said anything about it being slow growing. In fact mine was > back > > within 3 weeks. I am sure there is always a possibility that something is > wrong > > with the sample, or how it has been processed too.....so don't get too > scared. > > > > The collagen sequencing is done first with the skin fibroblasts. If they > > detect a deficiency, then they will look on the DNA for a mutation. > > > > Hang in there and let us know how it goes. > > > > Hugs, > > Sue > > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Thanks so much Sue, I'll deal with the cards that are dealt to me, but I am afraid, as Nurses we've seen so much, scarey! I am a strong person or used to be, thank you so much for your response and everyone's support! Please keep in touch! Hugs, Re: NIH Update/Bonnie > In a message dated 3/18/04 7:35:05 PM Eastern Standard Time, > ngsamuelson@... writes: > > << I am afraid it's going to be type IV,4. >> > > It is understandable that you are scared about it being positive for Type IV, > but the slow growth can be seen for a variety of reasons. I hope it is not > Type IV either, but if it is at least you will know now what you have and can > be treated appropriately. Take care. > > Hugs, > Sue > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 In a message dated 3/18/04 9:30:38 PM Eastern Standard Time, ngsamuelson@... writes: << as Nurses we've seen so much, scarey! I am a strong person or used to be, thank you so much for your response and everyone's support! Please keep in touch! >> Yes, I know what you mean. In my entire nursing career the one patient that stuck in my mind and the one situation I was so afraid of.......came true. It was a 32 yr. old mother who had some kind of connective tissue disorder who came in with a ruptured artery somewhere in the abdomen. They tried to fix it but she then started having many ruptures/bleeds and ultimately did not make it. As soon as I heard what caused me to lose a kidney....dissection of Rt. renal artery, I remember saying to my husband, " If I have more, you realize, I am in big trouble, right? " And sure enough, that is what happened. It still took a year to be properly diagnosed. I can understand your fear about VEDS.......pretty much everyone's worst nightmare. How that one situation struck me soooooo much......I must have known something intuitively......at this time no one in my family had any aneurysm, ruptures or dissections yet.....so there was no way to " know " . Also, there had been other severe situations with young mothers.....cancer, etc.....but they didn't instill that same fear in me. Strange....... Anyway, hang in there. We are all here for you no matter what the result of your biopsy is. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Sue, I have not forgotten your e-mail for me through CEDA on 3/21. May I have your home e-mail to write privately? Nurse to Nurse? Sincerely, S. ngsamuelson@... Re: NIH Update/Sue > In a message dated 3/18/04 9:30:38 PM Eastern Standard Time, > ngsamuelson@... writes: > > << as Nurses > we've seen so much, scarey! I am a strong person or used to be, thank you so > much for your response and everyone's support! Please keep in touch! >> > > Yes, I know what you mean. In my entire nursing career the one patient that > stuck in my mind and the one situation I was so afraid of.......came true. It > was a 32 yr. old mother who had some kind of connective tissue disorder who > came in with a ruptured artery somewhere in the abdomen. They tried to fix it > but she then started having many ruptures/bleeds and ultimately did not make > it. As soon as I heard what caused me to lose a kidney....dissection of Rt. > renal artery, I remember saying to my husband, " If I have more, you realize, I > am in big trouble, right? " And sure enough, that is what happened. It still > took a year to be properly diagnosed. I can understand your fear about > VEDS.......pretty much everyone's worst nightmare. How that one situation struck me > soooooo much......I must have known something intuitively......at this time no > one in my family had any aneurysm, ruptures or dissections yet.....so there > was no way to " know " . Also, there had been other severe situations with young > mothers.....cancer, etc.....but they didn't instill that same fear in me. > Strange....... > > Anyway, hang in there. We are all here for you no matter what the result of > your biopsy is. > > Hugs, > Sue > > > > To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 In a message dated 4/9/04 5:54:45 AM Eastern Daylight Time, ngsamuelson@... writes: << Sue, I have not forgotten your e-mail for me through CEDA on 3/21. May I have your home e-mail to write privately? Nurse to Nurse? Sincerely, S. >> Hi , Sure, that would be great, in fact most of my talking is done off list..... My email is smginleyrn@... Hope you are hanging in there! I know this has got to be very stressful for you waiting for the results. Did they send your biopsy samples to Dr. Byers lab? If so if you start getting anxious, write Pepin....she will give a little update about where your biopsy is in the process, etc. Her email is: mpepin@.... She is always so kind and helpful. Their whole lab is going to be speaking on many topics this year at the conference. I was the one who wrote them and approached them, same for Claire Francomano Its nice to feel like I am making a difference for us EDSers, somehow. Anyway, feel free to write anytime! if I don't answer right away I am real busy with Easter.....we are having an Easter egg coloring party here today with all the cousins(9 kids, plus adults), then I have to try to finish making chocolate.....then off to visit with two friends tonight and I may go out too as one is having a birthday! I have no idea how I do what I do, with all the stuff I have wrong. I think I am running on pure mental high! Feel like I have to get it all in before another episode occurs.....not likely I will live through another complication.......way too many life sustaining arteries with issues.....last time scared the heck out of me! Talk soon. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
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