Question
Hi Barbara...I am a 37 year old lady who suffered a ruptured brain aneurysm in May 2006. This was preceeded by many years of ill health-gyne complaints, bowel complaints and pain all over since the age of 19. At this stage i should add my mother also had the above complaints from around the same age and died in 1990 aged 37 from a ruptured brain aneurysm. I feel there are too many similarities for this just to be a coincidence as doctors suggest, particularly as my 21 year old daughter is now showing the same symptoms and suffered uterine rupture after giving birth. I also fit the described traits of thin lips, large eyes, pinched nose, bruise easily, viens clearly visible and protruding with bumps in them. Etc Etc.
When i had my latest arteriogram to check brain aneurysms i suffered an arterial bleed after the test and took 7weeks for bruising and pain to go. I have many other symptoms blood calcium low, phosphate high, sodium and potassium low, thyroid underactive, and liver function low.
Why after one young death one young near death is no-one taking any notice and seeming unwilling to investigate. Could it be EDS vascular type? Thanks for your time and for offering your help :)

Answer
Hi Nicole,

Let me preface first with a disclaimer - I'm not a doctor and can't give medical advice or answers.  That being said, I think you should consider seeking a second opinion and at least getting tested for Vascular EDS (VEDS).  

I have the hypermobile type of EDS, so I am going to point you in the right direction to reach people who know more info on VEDS.  

First and foremost, get in touch with Cathy Bowen.  Cathy is one of my associates at EDS Today.  Her email address is [email protected].   

Check out the yahoogroup http://health.groups.yahoo.com/group/VEDS/  There are 177 members, many of whom are very knowledgeable and can answer any questions you have.

Request a second opinion and get a skin biopsy test sent to Dr. Peter Byers at the University of Washington in Seattle.  Dr. Byers is one of the leading researchers for VEDS.
http://www.pathology.washington.edu/clinical/collagen/

Also check out these informative groups' websites:

EDS Today
http://www.edstoday.org
(this is the group I work with)

Ehlers-Danlos National Foundation
http://www.ednf.org

Canadian Ehlers-Danlos Association
http://www.ehlersdanlos.ca/

Ehlers-Danlos Support Group, UK
http://www.ehlers-danlos.org/

-Barb
[email protected]