Your questions, our answers

Ehlers-Danlos syndromes, or EDS, are a group of inherited connective tissue disorders. Their symptoms can be very different from one person to another.

To find out more, see our page Understanding EDS.

Yes. The 2017 international classification describes 13 types of EDS, each with its own features. The hypermobile type is the most common.

Find them all in The 13 types of EDS.

Diagnosis is based on a clinical examination (Beighton score, skin, scars, family history) and, for most types, on a genetic test. Hypermobile EDS is the only type without a genetic test: its diagnosis is based on clinical criteria.

The EDS reference and competence centres can make or confirm the diagnosis.

We speak of hypermobility spectrum disorders (HSD in English, TSH in French) when hypermobility causes suffering without meeting all the criteria for hypermobile EDS. The symptoms are just as real.

See How is EDS diagnosed?

New international criteria for all types of EDS and for HSD are due to be published on 1 December 2026, replacing those of 2017. There is no need to worry or to rush into new steps: your doctor or your centre will tell you whether this change affects you. We will update the site as soon as they are published.

See The 13 types of EDS.

EDS are hereditary conditions. Depending on the type, inheritance is dominant (a one-in-two risk for each child) or recessive (both parents must be carriers). The condition can also appear for the first time in a family. It can show itself very differently from one person to another, even within the same family. A genetic consultation can help you take stock before or during a pregnancy plan.

See how each type is inherited and our Children and teens page.

Yes. EDS can affect mobility, daily activities, studies or work, with pain and fatigue, to varying degrees. Adjustments are decided case by case.

Practical pointers on our page Living with EDS.

Yes. Some symptoms can be barely visible or fluctuate. What cannot be seen can still weigh heavily.

Gastroparesis is a stomach motility disorder: the stomach empties more slowly or in a disrupted way, without a mechanical blockage to explain it. Every case of gastroparesis is different.

To find out more, see our page Gastroparesis.

They vary from person to person: feeling full very quickly, fullness after meals, nausea, vomiting, pain or bloating. Symptoms alone are not enough to confirm the diagnosis.

Diagnosis is based on symptoms, ruling out an obstruction, and a test that measures how the stomach empties. The reference test is gastric emptying scintigraphy, over several hours.

See Diagnosis.

Digestive problems are common in people with EDS, especially hypermobile EDS, and some also have slowed gastric emptying. The mechanisms are still being studied.

See EDS and digestive problems.

There is no single diet: tolerance is very individual. Adjustments can involve the texture, quantity and frequency of meals, without forgetting nutritional needs.

Our tips: Diet & gastroparesis.

Talk to the medical team that follows you. Supplements, enteral nutrition or, more rarely, parenteral nutrition may be considered depending on the situation.

See our page Artificial nutrition.

Your GP can coordinate your care and refer you to specialists. For an EDS diagnosis, reference and competence centres are an important step, at your doctor’s request.

See our directory of professionals and the EDS centres.

Preparing your symptoms, treatments, documents and questions makes the discussion easier. If the professional knows little about your condition, bring a reference document.

Our guide: Preparing for your appointment.

Writing down a few notes helps you see how things change and give precise information during consultations, without having to remember everything.

Discover Tracking your symptoms and our practical guides.

Depending on the situation, the MDPH (French disability office) can review applications for rights and support, and RQTH (recognised disabled worker status) can help with workplace adjustments. At school, a PAI or PPS (French school support plans) can be requested.

See our Rights and procedures page and our fact sheet Preparing your MDPH application (PDF).

In an emergency in France, call 15 or 112. With vascular EDS, sudden, severe pain (abdomen, chest, back, head) is an emergency: call for help (15 or 112 in France) and say that you have vascular EDS. Prepare our sheet I’m going to A&E (PDF, in French) in advance to show it to the care team.

To be listened to and guided: Maladies Rares Info Services (rare disease helpline), 0 800 40 40 43 (free, in France).

You don’t need to understand everything to be supportive. Our page Information for loved ones gives pointers and resources for carers.

There is no password. On the Log in page, enter the email address used for your membership: you receive a login link, valid for 20 minutes and usable only once.

Check your spam folder, and make sure the address you entered is the one used for your membership. You can request a new link a few minutes later. If the problem persists, contact us.

Every member receives a paper passport by post. At each meet-up or event, it gets a stamp, and a code is given on site: enter it in your member area to get the online stamp. On the 10^th stamp, you receive a discount code for the shop, and a new passport begins.

Find out more: The n’Cie Passport.

The events are visible to everyone, and registration is done from the member area. When signing up, you can say that you are coming with a companion.

SED Gastroparésie N’Cie informs, supports and connects people around Ehlers-Danlos syndrome, gastroparesis and related conditions.

Discover the association and its team.

Membership is done online on HelloAsso, with the Join button at the top of every page. To renew, go to “My membership” in your member area.

No. The association informs, supports and connects people. It does not make diagnoses and cannot determine the right treatment for an individual situation.

By becoming a member, buying from our charity shop, volunteering or becoming a local contact (join the team), or by telling people around you about us.

Yes. You can contact the association to suggest a personal story, a resource or a professional. Content is checked before being published.