Ehlers-Danlos Support UK
1,571 members503 posts

Hi Everyone

Hello Everyone,

I`m new to this site so wanted to just say a little "hi" I have Elhers-Danlos and was diagnosed about 30 years ago, I was also diagnosed with Congenital Adrenal Hyperplasia from birth and I`m steroid dependant.

Its great reading everyone else`s post and getting advice as I am finding things are getting more difficult especially with EDS.

5 Replies

Hi Kezza07 and welcome. I hope you find being on here both helpful and supportive as I have,everyone is really kind..and I hope that you are able to get the medical help that you need for your EDS health problems..

Very best wishes 🙂 x


Hello Tillyray,

Thank you for your reply.

I am finding it very helpful so far and finding it very welcoming.

All the very best xx

1 like

Hi, If you have been diagnosed that long ago you must have noticed a lot of changes in how it has been treated or dealt with. Welcome.


Hello Jay66,

Thank you for your reply.

To be honest since being diagnosed I haven't been offered that much treatment at all but I have certainly noticed a lot of changes in my wellbeing and things are becoming more difficult as I`m getting older.

Only last year I had to have a mass of hernia removed from my lumber which the surgeon said it was very unusual but now I am struggling with really swollen feet and lower legs so I am having tests under a cardiologist and waiting for a MRI scan.


I swell up like that when my blood count gets really low. Also, we all need to do our part to raise awareness so that doctors hear us when we can't make a lot of noise. I find it painful to raise my voice and rely on my spouse to translate, but if doctors understand our silent invisible condition more then they will see the signs my spouse sees on their own.

Good luck. I think we are gonna need it.


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