ehlers-danlos syndrome anyone out there got or know someone who does.

[lynne192]

long story but since i was little i suffered alot of problems i got many suggestions over the years but nothing that really stuck... anyways been looking around and trying to get a grib with all the stuff that effects my every day life and came across ehlers-danlos syndrome

i looked and looked into it and i tick alot of the boxes for it, i know there is no cure and that it can cause infertility, miscarriages etc. which sadly we are battling, i know i have alot of other problems but i think this might be one of them....

currently i am dignosed with:

Hypermobility syndrome
PCOS
Asthma
Sever migraines
etc.....

there are sooo many symptoms of this condition that i seem to have but wondering if anyone out there has it and how it effects them etc? and how fertility wise they might get help and things that have helped them etc, and how they were dignosed?

anyone please help i have read alot of websites about it but its not the same as speaking to someone who has it.

 

[summer rain]

I hope you get some answers, I've come across this disorder before as two of my sons have high arched palate and also mine have a blue-grey tinge to the whites of their eyes; and these are both symptoms of this disorder. There is hypermobility and other symptoms of this disorder in both sides of the family. Never met anyone who has actually been diagnosed though. xx

 

[pinkishgirl]

I have hms which, depending on which specialist you speak to, is either classes the same as (h)eds or not. I have not had a period fo 6 months, normal bloods and ultrasound and internal so waiting for gynae cons apt to discuss further so can hopefully get pregnant so i;ll be folloring this thread with interest.
I was diagnosed after numerous joint complaints, ibs and fatigue at my docs , I was lucky having a gp with special interest in rheumatology. Have you been on hms site??? That may be useful

 

[lynne192]

i am under care of the only main HMS specialist in UK, he is brilliant and done sooo many studies in the field but only recently after years of review dignosed with EDS, which has worried me but my asthma is pretty bad now too sooo not too good in all fields we have been under care of a Fertility specialist and they have not said anything so i am guessing they are going to just help us get pregnant then work from there only had one sucessful pregnancy and my DS was a premmie so they are sure i will go about 30ish weeks again which is a worry but as huge a worry as losses

hope you get some help soon do you attend the HMS clinic?

 

[BeesBella]

I have a friend who has EDS quite badly (however, I don't know much about it), she is always in pain and dislocating joints, she now is usually in a wheelchair poor woman, but I know it effects different people differently.

 

[lynne192]

thanks for sharing sorry to hear about your friend xxx