Question
QUESTION: Hi Barbara,

You apparently responded to my question that I sent last week but the email that was sent to me only included my question with no response.  Can you please re-send?  Thank you

ANSWER: Sorry to see my answer didn't come through.  I didn't get a copy back myself this time, so hopefully I can recreate what I wrote.

First, the issue of VEDS should be ruled out through a skin biopsy. The blood test is relatively new and not 100% accurate, but it is close.  If you aren't satisfied with the test results and want more certainty, definitely ask for the VEDS skin biopsy.

Second, keep in mind that all types of EDS can exhibit a wide range of symptoms, so it is possible to have VEDS-like symptoms and not have VEDS.

As for more specifics on pregnancy, I would recommend getting in touch with the local and internet support groups.  I have never had children because my husband also has EDS, so the risks are just too high for us.  You can go to http://www.ednf.org to look for local support groups or go to http://www.yahoogroups.com and look for internet support groups.  The two most popular are CEDA and EDSers.  You can also read the Spring-summer 2005 issue of EDS Today which deals with pregnancy. http://edstoday.org/newsletter/Issues/Issue11.htm

I think that covers everything from my mysteriously missing answer.  If you have any questions, don't hesitate to contact me.


---------- FOLLOW-UP ----------

QUESTION: Thanks, Barbara.  Have you ever heard of hypermobile patients exhibiting signs of vascular problems?  If so, I would think they would be less severe than those who actually have VEDS.

I can talk to my Dr. about the skin biopsy but I think he'll try to talk me out of it.  I don't think insurance covers it and it's several thousand dollars.  :(

Answer
People with different types of EDS can varying symptoms.  Another person with EDS, Maggie Buckley, wrote a very good article explaining EDS symptoms as poker chips.  I'll try to paraphrase her example.  

Each type of EDS has a list of symptoms.  For example, VEDS symptoms are blue chips, HEDS are green, etc.  Any person with EDS may have symptoms from each of the types, but the diagnosis is usually determined by the color that has the most chips.  This is particularly true of the types of EDS that don't have a biochemical test.  With VEDS, there is a definitive test, so you can rule out the EDS Type, but not necessarily all of the symptoms of that type.