Hughes, Sjogrens and Ehlers Danlos Syndrome

[floss112]

Hi,

Just wondered if anyone else has been diagnosed with Ehlers-Danlos Syndrome (inheritable connective tissue disorder) along with their Hughes, Sjorgrens etc?

I just wondered as those with EDS tend to metabolize drugs more rapidly, so wondered how others might cope with what appears to be quicker than usual metabolization of heprin. Did your consultant willing and able to take this on board?

Thanks x

[MaryF Administrator]

Hi, I have a friend I see from time to time who has it plus Hughes Syndrome/APS and I think there are one or two on this forum. Have you joined the forum on HU, as well as this one? healthunlocked.com/edsuk ? MaryF

[loretta1106]

I've never heard of Ehlers-Danlos Syndrome. I thank you as I learn so much here. What test do they give you for this syndrome? It's important to know as I have a daughter and siblings who should be tested. I have APS and Mixed Connective Tissue Disorder and I've tried to explain it to my family and esp my daughter--urging her to be tested as she has vicious headaches but since APS seems to be so rare in the USA, it's not taken seriously by people who hear of it. If was more common and well known--it would be taken more seriously. Take care.

[MaryF Administrator]

Please also look at the new post that hast just been put on by KateH from Hughes Syndrome Foundation charity. MaryF

[Simon-Hyett]

I was diagnosed with EDS as a child (now 26) and have had a number of Pulmonary Embolisms, Doc has just given me a diagnosis of Hughes.

[Lure2 in reply to Simon-Hyett]

Hi,

Why not put a question on this site about your new diagnose!

The most important thing is that you have got a Specialist of APS treating you and that you are enough and properly anticoagulated.

This illness is so rare and so very few doctors know this illness. It is good that you have got a diagnose and now you have to try to find your Specialist to be well anticoagulated as we have very thick blood and that is the key to feel better.

This illness is treatable if you meet the right Doctor!!

Best wishes from Kerstin in Stockholm