Posts - Ehlers-Danlos Support UK | HealthUnlocked

Ehlers-Danlos Support UK

2,953 members • 935 posts

All posts for March 2019

How to get a diagnosis?

Hi I explain a little, im 45 , have had body issues all my life, dislocations, joint pains, injuries, gastro pain. Roll on to now and i have been told various...

Hi I explain a little, im 45 , have had body issues all my life, dislocations, j...

Lulububs

•5 years ago

6 Replies

Diagnosis at last...…...or is it?

Hi everyone I'm dad to a once bubbly, challenging, into everything daughter who has had the worst 12 months anyone should have to suffer. Preaching to the...

Hi everyone I'm dad to a once bubbly, challenging, into everything daughter who ...

mickyd2406

•5 years ago

6 Replies

This is all new to me.

Hello Everyone. I have suffered from various health problems that the medical profession was not able to give answers to. Nothing too serious though until my...

Hello Everyone. I have suffered from various health problems that the medical pr...

AiMax

•5 years ago

10 Replies

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Bad Experience At. Genetic Medicine Clinic

Well I put a post on here a while back after a bad experience at Genetic Medicine at St Marys. I contacted PALS regarding my experience. They were most...

Well I put a post on here a while back after a bad experience at Genetic Medicin...

Details

•5 years ago

4 Replies

The caretaker,martre problem

Hi all recently me and my wife split up and going through a divorce 21 years married. Any way I've had a couple of dark moments which has ended me being put...

Hi all recently me and my wife split up and going through a divorce 21 years mar...

Christaylor4076

•5 years ago

1 Reply

Diagnosis and support

Hello I am diagnosed with Behcet’s Syndrome and ‘primary hyper mobility syndrome’. I have excellent care and support from a specialist centre for Behcet’s but...

Hello I am diagnosed with Behcet’s Syndrome and ‘primary hyper mobility syndrom...

VickiOliver

•5 years ago

4 Replies

Hello everyone

Hi everyone, I was wondering how you were all diagnosed I just want a bit more information before I go back to my rheumatologist and we discuss all of this....

Hi everyone, I was wondering how you were all diagnosed I just want a bit more ...

Itsallinthehips

•5 years ago

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Diagnosed with Joint Hypermobility Syndrome but I’m not sure.

Hi everyone. I’m looking for your thoughts. I have been suffering from considerable pain for a year now. I have alternating pain in my buttocks, pain in my...

Hi everyone. I’m looking for your thoughts. I have been suffering from considera...

browny52

•5 years ago

13 Replies

Feel like being ignored by Rheumatologist and GP not sure what to do next?

Hi guys, I posted here a while back because I had suspected EDS (probably Type 3), as I slipped a disc at 15 from stopping suddenly at the bottom of the...

Hi guys, I posted here a while back because I had suspected EDS (probably Type 3...

emilyhedgehog

•5 years ago

13 Replies

Family with vascular EDS but I have hypermobility...

Hello So on my mother's side there is Vascular type EDS unfortunately. My brother, who sadly passed away from a rupture inherited it from my mum who is...

Hello So on my mother's side there is Vascular type EDS unfortunately. My broth...

Dumplinglife19

•5 years ago

1 Reply

The puzzle of EDS

My son (26) was diagnosed with hEDS & POTS this year after 16 years of pain and anxiety. My daughter & son from another marriage have got odd symptoms that is...

My son (26) was diagnosed with hEDS & POTS this year after 16 years of pain and ...

Anne2018

•5 years ago

5 Replies

A little worried...could I have vEDS?

Hello, I'm Lisa, 29 years old and here goes my story... Back in 2017 I went to my dermatologist because my hair was falling out a lot. She ran some tests, one...

Hello, I'm Lisa, 29 years old and here goes my story... Back in 2017 I went to m...

Lfilim01

•5 years ago

5 Replies

Paralysis of colon, anal prolapse, way forward?

Hi - my daughter 26 has for many years been suffering from extreme digestive issues. She describes her descending colon as being dead, she has to massage her...

Hi - my daughter 26 has for many years been suffering from extreme digestive iss...

Cha29

•5 years ago

12 Replies

Domperidone side effects?

Has anyone else tried domperidone? Been told I have Gastroparesis and really want to be able to eat but really freaked out when the side effects list anxiety,...

Has anyone else tried domperidone? Been told I have Gastroparesis and really wan...

AliPixie

•5 years ago

3 Replies

Genetic Testing St Mary's Hospital Nightmare

Today I had my assessment at genetic testing at St Marys Hospital Manchester. I had been referred here after a consultant gynaecologist wrote to my GP to say I...

Today I had my assessment at genetic testing at St Marys Hospital Manchester. I ...

Details

•5 years ago

9 Replies

Gastroparesis treatment (drugs or natural?)

Been suffering with stomach problems for months, posted a little while ago when it all began, thanks so much for the input and support people gave. It turns...

Been suffering with stomach problems for months, posted a little while ago when ...

AliPixie

•5 years ago

5 Replies

Where to get help on diagnosing EDs.

Hi, Where can I go to get genetic testing done for Ehlers Danlos. I live in East Sussex in the UK. I am in my 50s but my 2 adult daughters have so many...

Hi, Where can I go to get genetic testing done for Ehlers Danlos. I live in East...

honeybea22

•5 years ago

5 Replies

Pelvic Floor Exercises

So just needed some help and advice, my blood pressure doctor (for my hypotension) has suggested I use this;...

So just needed some help and advice, my blood pressure doctor (for my hypotensio...

JapaneseEevee

•5 years ago

2 Replies

Stretchy eye and face skin... HELP

My eds is making my facial skin more elastic as I age.. My upper eyelids are starting to hang over my eyelashes and my forehead is stretchy.. My lower eye lids...

My eds is making my facial skin more elastic as I age.. My upper eyelids are sta...

Asiaohara

•5 years ago

11 Replies

I am 28 Year old male and I have EDS (Ehlers-Danlos syndrome) Everyone tells me that I have a soft body like a female. Is it related to EDS?

Hi Everyone. Last year I found out that I have EDS. I had hypermobility since I was a kid but from Last 3-4 years I started noticing that my body especially my...

Hi Everyone. Last year I found out that I have EDS. I had hypermobility since I ...

Alcatraz

•5 years ago

4 Replies

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Posts - Ehlers-Danlos Support UK | HealthUnlocked

Ehlers-Danlos Support UK

All posts for March 2019

How to get a diagnosis?

Diagnosis at last...…...or is it?

This is all new to me.

Bad Experience At. Genetic Medicine Clinic

The caretaker,martre problem

Diagnosis and support

Hello everyone

Diagnosed with Joint Hypermobility Syndrome but I’m not sure.

Feel like being ignored by Rheumatologist and GP not sure what to do next?

Family with vascular EDS but I have hypermobility...

The puzzle of EDS

A little worried...could I have vEDS?

Paralysis of colon, anal prolapse, way forward?

Domperidone side effects?

Genetic Testing St Mary's Hospital Nightmare

Gastroparesis treatment (drugs or natural?)

Where to get help on diagnosing EDs.

Pelvic Floor Exercises

Stretchy eye and face skin... HELP

I am 28 Year old male and I have EDS (Ehlers-Danlos syndrome) Everyone tells me that I have a soft body like a female. Is it related to EDS?

Search posts

Latest poll

What other conditions have you been diagnosed with in addition to EDS?

Topics

Archive