Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Bonnie, Thanks so much for writing me back, I really appreciate! Your incite helps! They are looking for all the bad ones, and I'm scared! I try to help others on the board, but I don't know the answers for my questions. Thanks so much for your help. Hugs, S. Re: NIH Update > > > Hi all, > Anyone read my post? Any responses? > Sincerely, S. > I can't stay up late like the rest of you all, too tired! > Sincerely, S. > ~~~~~~~~~~~~~~~~~~~~` > > Sorry nancy - > > They actually grow the skin cells from the punch biopsy they took from your arm. You've heard of growing skin cells for skin grafts? I think it's a similar thing. They have to have enough skin cells grown to do the microscopic exam on them. There are different collagens in the body and they look for those types of collagen on the genes...where the collagen " code " is kept. I know from our biopsies, they were looking for VEDS type of collagen. I don't know if the researchers look at the other types or not. > > Hope this helps > Bonnie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi -- I know that when I had the biopsy done for my test, it took 3 to 3 1/2 months for the results to come back. The wait is one of the most stressful times I have ever gone thru. Hang in there - you should have some info soon. Love, Patti Re: NIH Update > > > Hi all, > Anyone read my post? Any responses? > Sincerely, S. > I can't stay up late like the rest of you all, too tired! > Sincerely, S. > ~~~~~~~~~~~~~~~~~~~~` > > Sorry nancy - > > They actually grow the skin cells from the punch biopsy they took from your arm. You've heard of growing skin cells for skin grafts? I think it's a similar thing. They have to have enough skin cells grown to do the microscopic exam on them. There are different collagens in the body and they look for those types of collagen on the genes...where the collagen " code " is kept. I know from our biopsies, they were looking for VEDS type of collagen. I don't know if the researchers look at the other types or not. > > Hope this helps > Bonnie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi -- I know that when I had the biopsy done for my test, it took 3 to 3 1/2 months for the results to come back. The wait is one of the most stressful times I have ever gone thru. Hang in there - you should have some info soon. Love, Patti Re: NIH Update > > > Hi all, > Anyone read my post? Any responses? > Sincerely, S. > I can't stay up late like the rest of you all, too tired! > Sincerely, S. > ~~~~~~~~~~~~~~~~~~~~` > > Sorry nancy - > > They actually grow the skin cells from the punch biopsy they took from your arm. You've heard of growing skin cells for skin grafts? I think it's a similar thing. They have to have enough skin cells grown to do the microscopic exam on them. There are different collagens in the body and they look for those types of collagen on the genes...where the collagen " code " is kept. I know from our biopsies, they were looking for VEDS type of collagen. I don't know if the researchers look at the other types or not. > > Hope this helps > Bonnie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 hi Betty, I didh't see your originial post about this but from what I gather, you are still waiting for results of your sample (biopsy) that NIH did . When I had mine done there about 3 or 4 years ago, it took forever. In fact, it took a year or so for me to get the results. Part of that was a mix up as they had the results and forgot to let me know them. Hope you hear something soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Hi Sue, Thanks for writing back! I just don't understand why it is taking so long. They did the skin biopsy at NIH, one of the best institutions in the world. I am afraid it's going to be type IV,4. Oh well, nothing I can do.What is,is. Thankyou, S. 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 -- No matter what your test comes back as we will all be here for you - any time, any day, any place. Love, Patti 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 -- No matter what your test comes back as we will all be here for you - any time, any day, any place. Love, Patti 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 -- No matter what your test comes back as we will all be here for you - any time, any day, any place. Love, Patti 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...
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