Hidden in Thyroid UK2 years ago
This is Ehlers-Danlos correct?
Could this be Ehlers-Danlos Syndrome?
Hidden in Ehlers-Danlos Support UK6 years ago
Hi, I've just joined today and this is my story.
Well, I've always been very bendy. Not to the point of doing the splits - I've never, EVER m...
Hughes, Sjogrens and Ehlers Danlos Syndrome
floss112 in Sticky Blood-Hughes Syndrome Support5 years ago
Just wondered if anyone else has been diagnosed with Ehlers-Danlos Syndrome (inheritable connective tissue disorder) along with their Hug...
POTS, Dysautonomia & Ehlers Danlos Syndrome....
34Ziggy in Arrhythmia Alliance6 years ago
Hi everyone, nice to meet you... I am a newly diagnosed patient as of the begining of the year... Just want to introduce myself, I just foug...
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Is there a difference between hypermobility syndrome and ehler danlos syndrome?
missteal in Ehlers-Danlos Support UK7 years ago
I have had a formal diagnosis of hypermobility syndrome but have recently been told by some people that this is the same as EDS hypermobilit...
are ehler danlos 3 and hypermobility syndrome one and the same ?
Does anybody else have Hypermobility Syndrome/Ehlers Danlos Syndrome?
earthdweller in Parkinson's Movement5 years ago
I've had this syndrome since 2001, and I feel as though this is heavily related to my Parkinson's symptoms. My right side is where my joint...
Non alcoholic fatty liver disease and Ehler Danlos syndrome
Grandma2aiden in Ehlers-Danlos Support UKa year ago
I was recently diagnosed with NAFLD and was wondering if anyone else with EDS has experienced these co-morbid disease?
Ellen from US - Ldn for Sarcoidosis & Ehlers Danlos Syndrome
liveurlife in LDN Research Trust4 years ago
Scardosis and Ehlers Danlos Syndrome (EDS) - Ellen shares her experience.
liveurlife in LDN Research Trust3 years ago
4 Normal Echo's. Should I be concerned? Ehlers Danlos Syndrome.
bflare in British Heart Foundation4 months ago
I am a 40 year old male with a genetic condition called Classical Ehlers Danlos Syndrome. It effects the production of collagen throughout t...
Anyone else with Ehlers Danlos Syndrome (EDS) or hyper mobility syndrome? (To go with their Lupus that is!)
Blueberry in LUPUS UK7 years ago
I'm finding writing about everything quite cathartic, especially now I've found somewhere with so many similar people!
I was just wondering...
Lupus like condition plus suspected Hypermobilty Ehlers Danlos Syndrome. Advice please.
Hidden in LUPUS UK8 months agoPOPULAR
Now being referred to a geneticist by rheumatologist. Just looking for advice on the subject.
Fertility treatment/egg freezing and Ehlers Danlos/POTS syndromes- anyone out there with same story?
Jennyfromtheblock in Fertility Network UK3 years ago
I am new to the forum. Have Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome, syncope and for the last 3 yea...
Anyone: have you been diagnosed with Achenbach syndrome (paroxysmal haematoma of fingers (& toes)) or Ehlers Danlos?
Barnclown in The Australian Sjögren's Syndrome Association6 years ago
Does anyone also have what I've been calling \"tissue bleeds\" in their fingers & toes. I'm 60 and have experienced these since my 20s, and ...
Barnclown in Scleroderma & Raynaud's UK (SRUK)6 years ago
In September I posted a ? asking if anyone has what I called \"tissue bleeds\" in their fingers & toes, and I described my version of these....
Referral from rheumatologist for suspected ehlers danlos syndrome. With lupus like symptoms. Advice please.
Hidden in Ehlers-Danlos Support UK8 months ago
I have been back to my rheumatologist due to lupus like symptoms. An endocrinologist and dermatologist suspect lupus or somet similar autoim...
Lupus + Marfan + Ehlers-Danlos? Syndrome. My rheumy is convinced that this is what I'm suffering from (having tests etc).
jayniey in LUPUS UK7 years ago
Does anyone know anything about this? She told me it's very rare (about 1 in 200,000). I've been stuck in front of a psych (without being as...
Hi out there! Has anyone got joint hypermobility syndrome (Ehlers-Danlos Syndrome III) and having problems with Pulmonary Rehab exercises?
stillmovin in British Lung Foundation6 years agoPOPULAR
I haven't yet been on my course but I am worried about the type of repetitive exercises they set you to do as us bendy people with EDS have ...
Warning to all with an autoimmune disease, I have Lupus and Sjögren's. I also have Ehlers Danlos syndrome and am going for genetic testing.
Pam-EDS in LUPUS UK3 years ago
Hi folks just a word of warning if you have SS or Lupus RA or PsA and are 'double Jointed' hyper mobile. Please tell your consultants, GP an...
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?
Alcatraz in Ehlers-Danlos Support UK8 months ago
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...
lana59 in Macular Society3 years ago
I also have hypermobility and Ehlers Danlos Syndrome Type III with overlaps in other types of EDS.
ehlersdanlosuk in Ehlers-Danlos Support UK7 years ago
Welcome to the Ehlers-Danlos Support UK community!
The point of this community is to provide a space where you can share your experience, s...
Introduce yourself to the community
LuciaHU in Annabelle's Challenge - Vascular Ehlers-Danlos5 years ago
We’re excited about what you can go on to do for those interested in Vascular Ehlers-Danlos Syndrome. We hope you are too. Write somet...
what type of EDS is really stretchy skin,especially on the face ?
EDS Patient Involvement Opportunity
Wendy39 in LUPUS UK8 months ago
***HeadsUp EDS Patients #InvolvementOpportunity***
***Have your say in designing future research on childbearing with hypermobile Ehlers-Dan...
Feel This Pain: Ehlers-Danlos
DontPunishPain in LUPUS UK4 years ago
Much more than just a \"stretchy skin\" disease, Ehlers-Danlos is a very painful syndrome with very real consequences for those who have it.
Does anyone with Scleroderma have a history of Ellers Danlos in the past?
lifeforce in Scleroderma & Raynaud's UK (SRUK)6 years ago
Was told i have \"orthostatic hypotension\" ? Thoughts?
kellyrosemua in Anxiety Support2 years ago
has anyone else been told they have this along with their anxiety? apparently my blood pressure drops around 20 points when i stand up.. all...
Hairgal in Restless Legs Syndrome2 years ago
I don't know if I have RLS I just know that I hurt and ache all over. I cannot sit down for any length of time . I start to hurt and I need...
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