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I just came across a diagnostic lab at Washington University that does independent EDS testing.
COLLAGEN DIAGNOSTIC LABORATORY
http://www.pathology.washington.edu/clinical/collagen/index.php/contact/
Mailing and Shipment Address:
Room D519 Health Sciences Building
1959 NE Pacific Street
Seattle, WA 98195Cool! Thanks, Robynne! I wonder if they test skin biopsies, too? The ‘main’ connective tissue lab that most folks use is out of – North Carolina, is it? Anyone? I can’t quite remember. They’re keeping a sample of my skin for future testing if needed (I took advantage of this once!). Thanks for the info, Robynne! 😉
Thats Dr Byers at WA EDU. The leading expert on Vascular EDS.
Hon, do you know what he can screen for? Vascular, I assume… Marfans? Loeys-Dietz? Athrochalasia form? etc? As most of you know, a HUGE number of us suffer from the “Hypermobility form” or the “Classical form”. There has never been a collagen disorder found for Hypermobility type, nor for about 50% of the Classical form. I don’t think there is a genetic defect in collagen (you heard it here first, and you heard me right!). Nope, I think it has become a “dumping ground” for anything that results in joint hypermobility — some of it is treatable, I believe. That is where much of my research is focused. It is CRITICAL to rule out vascular, etc., and I’m trilled they can do this! Has anyone tried to do this with their 23andme yet? I wonder if those forms are in there… Thanks so much! 😉
This is the lab that my test went. I will let y’all know what the results are when they come back. My geneticist drew 2, 7 mL EDTA tubes of blood. She is running the tests for both the classical form and the vascular form. Dr. Diana I had a skin biopsy done here by my dermatologist and she sent my punch Bx to UTSW. It came back positive for a connective tissue disease.
Shonda .This is the lab that my test went. I will let y’all know what the results are when they come back. My geneticist drew 2, 7 mL EDTA tubes of blood. She is running the tests for both the classical form and the vascular form. Dr. Diana I had a skin biopsy done here by my dermatologist and she sent my punch Bx to UTSW. It came back positive for a connective tissue disease.
Shonda .AWESOME! Now the waiting game, huh? Please keep in mind that about 50% of us Classical folks show no genetic disorders of collagen. I KNOW your fingers are crossed about the vascular form! Mine are crossed for you, too.;)
Thats Dr Byers at WA EDU. The leading expert on Vascular EDS.
Hon, do you know what he can screen for? Vascular, I assume… Marfans? Loeys-Dietz? Athrochalasia form? etc? As most of you know, a HUGE number of us suffer from the “Hypermobility form” or the “Classical form”. There has never been a collagen disorder found for Hypermobility type, nor for about 50% of the Classical form. I don’t think there is a genetic defect in collagen (you heard it here first, and you heard me right!). Nope, I think it has become a “dumping ground” for anything that results in joint hypermobility — some of it is treatable, I believe. That is where much of my research is focused. It is CRITICAL to rule out vascular, etc., and I’m trilled they can do this! Has anyone tried to do this with their 23andme yet? I wonder if those forms are in there… Thanks so much! 😉
The Collagen Diagnostic Laboratory (CDL) is housed in the Department of Pathology at the University of Washington, Seattle, WA. The CDL offers diagnostic testing for osteogenesis imperfecta (OI), several forms of Ehlers-Danlos syndrome (EDS), and select other connective tissue disorders. We also provide consultation for clinicians and families with questions on these rare disorders, review x-rays and clinical history, and offer research testing and enrollment in research studies.
Byers is the researcher who found the mutations that causes VEDS. Brilliant man.
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