20,894 members16,585 posts

How many of you have EDS?

How many of you have EDS?

Just out of interest I would like to know how many people are double jointed? Last year the BBSA the SJOGRENS charity did POTS and hopefull they will do Ehler-Danlos at their conference too. I have PsA so I go down the negative path but as well as EDS my mother gave me psoriasis. If that wasn't enough she gave me Chiari1 too. I have had a letter today saying as EDS is now in Rheumatology your Rheumatologist must do the necessary tests! My poor consultant knew about the SS & I on the drug for Lupus, I told her about EDS and POTS she agreed and the POTS is confirmed, I'm bendy too that's confirmed. But how many Rheumatologist's will know about Chiari1! So to leave UCH to be told I'm amazed your alive was funny but now I'm furious. How on earth are any Rheumatologist's going to understand Chari 1 as its a neurological problem! Sorry for the rant folks but I am cross.

3 Replies

Hello new...yes, there are several of us here who are double jointed + some with EDH....and quite a few with hypermobility of various other types. There don't seem to many here with chiari diagnosed, but I for one suspect chiari in my mix due to various chronic neuro cerebral symptomatology following on from a fall from height onto my head @ 7 (I have infant onset lupus). My lupus clinic is also watching me re POTS

Am v glad you're sure you'll get some great replies. It's gotta be tough to contemplate all this v much feeling for you. You're a v experienced & knowledgeable patient. This will stand you in good stead now...and from this question you've posted, I know you've got what it takes to make your new clinic understand that you are counting on them to facilitate this transition including the right monitoring of your diagnosed connective tissue disorders + referal to the appropriate neurology etc clinic for experienced! skilled! monitoring & treatment of your chiari1.

I'll be following this sure it'll help me too

Take care

🍀🍀🍀🍀 coco

PS i think you've found it already, but HealthUnlocked hosts a great EDH forum: Ehlers Danlos Support's on the communities table...I think some there have chiari experience


Thank you for that. I'm utterly furious as I went to that hospital age 8 for large 'tonsils' my mother's words, I worried for years if I might have them out! But only to return merely to be specimens for medical research. I don't mind that at all but to not get a diagnosis of what I inherited as I have 3 sons alive and my eldest died of apnea. As I think I said I run a group for Sjogrens on behalf of the BSSA which includes Lupus and APS (I don't have that) as I'm a bleeder not a clotter. But to leave that hospital with the remark I did really does make me wonder what on earth is happening to the NHS. The lack of Knowlege amongst medical professionals is incredible. There were 10 types of EDS but they have lumped them together which is supposed to make it easy it doesn't it makes it worse. So with Chiari 1 which gives you scoliosis I have 3 blockages in my central nervous system. I diagnosed my GP! Now we are both trying to work out which type of EDS I have is it V or VIIA VIIB VIIC? I think VIIC however as most organisations won't give you any help and with EDS, JHS & POTS all breaking out last year as a result of 50 years of lack of knowledge of EDS. There are so few Rheumatologist's who will understand all this will be 10% if that. Most of you will be TYPE III so don't bother asking for a genetic test there isn't one! My problem is I'm not! I will of course tell you when the BSSA conference will be as I really hope they do EDS and as Dr. Price is well aware EDS is in rheumatology I'm sure they will! I got POTS last year, I usually get my way. The other suggestions were hormones, as that will help men with SS & Lupus as well as women and the wolf and its Cubs.


My son's have been diagnosed as have I with Eds lll due to hyper bendy,subluxations,stretchy skin,gastric involvement etc plus possible crossover with anotherone of the other types but the one son has chiari 1 and no epilepsy plus now showing cardio complications and circulation concerns young one has

epilepsy no chiari but appears to have lupus plus pots and bone cysts i have lupus,ra,ss plus numerous others.Weve all been seen by rheumys and genetics and still each year something else turns up to cause problems.

I think the most folk get now is the label "complex problems patient" and until I see that on a hospital department sign I know it will be a constant uphill battle.

1 like

You may also like...