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Thursday, December 8, 2016
My son in law has lost a gall bladder and kidney to EDS. His latest Dr. appt he was told he now has an aneurism in his remaining kidney and that he is a ticking time bomb. Good grief. Aren`t there Drs. out there somewhere who know of some way of preventing this happening, and not just tell him he a timebomb just waiting to explode and kill him? He is 41 yrs old. His father had a milder form of EDS, but it was misdiagnosed, for 25 yrs, he was told he had MS, and had a stroke. Only when my son in law was diagnosed did they start the genetic testing of the family, but several of them are still in denial that he have it. Is there any hope for him having more options than what his drs. are telling him? thank you.
Typically, aneurysms in EDS should not be fixed unless they are extremely large, due to the high complication rate with surgery. There is a pathologist at the
in Seattle who is a world-renowned expert in EDS, and although he does not physically treat these aneurysms, he might be able to give more information. Unfortunately, I cannot remember his name; however, you may find the links below helpful. Universityof Washington
Jean E Starr, MD
Clinical Associate Professor of Vascular Surgery
College of Medicine
The Ohio State University