I am 29 years old and was diagnosed with EDS vascular in 2003. It took my doctors several failed surgeries and years before they knew what was wrong with me. I have had an Ileostomy for 2 years now. I live in a very small town and have to travel 3 hours to see doctors who know anything about EDS. So you can say not alot of people in my area know to much about it besides my family and friends who all jumped in to leatn as much as they can, so they would know what to look ut for. I would lov to take to people who can feel what I am going through sometimes.

EDS IV is a very rare and different case to all the other ones. I'm 15 and have was diagnosed when i was two, you always have to concious about knocking yourself as rupturing of organs and main arteries is a common occurence and also the breakage of the skin which is a lot harder to heal. It sucks a lot and it frustrates me too, but its good to be able to talk to people who have it :) I know that there is a doctor in Sydney called Eric Haan who focuses of EDS, maybe it would be worth emailing him to find out more. Good luck.

Hi, I'm Nick, I'm 28 and after 4 years of enquiries, two days ago I received a provisional diagnosis of EDS 4, but I have to have it confirmed by a geneticist. My problems started in 2007 when i was admitted to hospital with very high blood pressure (I am now hypertensive) bleeding kidneys (blood in urine) and a range of other problems. Whilst I returned to what I considered good health, I had a numb leg in the winter and went to see a vascular consultant about this as I was missing a pulse in the leg. 2 days ago, after an MRI and CT scan, he told me he thought i had EDS4. Needless to say this has been devastating news. I wanted to speak with others with the same condition and just see if this helps in anyway. I dont seem to fit the clinical picture for EDS4 but i think i have the arterial ruptures that are a tell tale sign.

Hi Nick, The geneticist will be able to confirm an EDS 4 (vascular EDS) diagnosis with a blood test. Although the diagnosis will be scary it will allow your doctors to treat you appropriately. It sounds like whether it is positive or not they will want to treat you like you have a very fragile vascular system. Feel free to ask any questions and take a look at www. Http://Ehlerdanlosnetworkcares.org Renee