Living with EDS and getting care

Do you have vascular EDS? This page does not fully apply to you: your care, your follow-up and your precautions are different. Follow the advice of your FAVA-Multi centre.

Tailor-made care

The French national diagnosis and care protocol (PNDS) for non-vascular EDS sets four goals: stabilising or slowing progression, preventing complications, improving quality of life and supporting school or working life.

Each type of EDS does not carry the same complications, and symptoms vary a lot from person to person: care is therefore built case by case, with several healthcare professionals.

Rehabilitation and physical activity

Rehabilitation aims to limit the consequences of hypermobility, reduce pain, compensate for limitations and support independence in daily life, at school and at work.

Physiotherapy

Strengthening, stabilising joints and working on proprioception (the sense of the body’s position).

Occupational therapy and psychomotor therapy

Complementing physiotherapy: everyday movements, aids, coordination and confidence in your body.

Adapted physical activity

Encouraged, but tailored and supervised by a professional, for example an adapted physical activity instructor.

Patient education

Therapeutic patient education (TPE) programmes help you better understand your condition and organise daily life. For example, the PrEduSED programme, offered as a residential stay at the Massues centre in Lyon. Ask your reference or competence centre.

Sports to avoid according to the PNDS: competitive sport (such as gymnastics), repeated lifting of heavy loads, sports that put heavy strain on the joints, and contact or pivoting sports.

Adapted activity in daily life

Supporting the joints day to day

Depending on needs, several aids can be prescribed, often by a physical medicine and rehabilitation (PM&R) doctor.

Orthoses and splints

They stabilise a joint and can also relieve pain.

Compression garments

Depending on needs, they can help with support and body awareness.

Orthopaedic insoles

Adapted to the foot and posture, to spread pressure better.

Equipment

Seat cushions and backrests, a suitable mattress and, in severe cases, a wheelchair to preserve independence.

What about surgery? It may be considered when sprains or dislocations are frequent or severe, if rehabilitation has failed. Scoliosis may also require physiotherapy, a brace or surgery.

Two symptoms to take seriously

Pain can affect the joints and muscles, but also the abdomen, pelvis or head. The PNDS recommends a multidisciplinary approach combining medication, rehabilitation and psychological support, to act on both the causes and the experience of pain.

Fatigue often has several causes: muscles, proprioception, dysautonomia, pain. Look for and treat what can make it worse: anaemia, deficiencies, side effects of medicines, sleep problems, allergies or a thyroid problem.

Associated problems that need care

Each problem is investigated and treated by the relevant specialist, taking EDS into account.

Digestive problems

Reflux, bloating, pain, constipation or diarrhoea are common. Some treatments (for acidity, laxatives) can bring relief. Gastroparesis

Urinary problems

Leaks, urgency, getting up at night: pelvic floor rehabilitation with a physiotherapist may be offered.

Skin and wound healing

When the skin is fragile: preventing wounds and bruises, protecting exposed areas, adapting stitches.

Contraception and pregnancy

In non-vascular EDS, hormonal contraception is not contraindicated. Talk to your doctor or gynaecologist about it. A pregnancy should be planned and followed in a suitable unit.

Other specialties

Heart, breathing, neurology, gynaecology, ENT, eyes, teeth: tests and treatments adapted to the symptoms.

Psychological support

Living with a chronic illness is hard: psychological support is part of care.

Always mention your EDS

Before a procedure, dental care, an anaesthetic or giving birth, tell the teams about your EDS. When the skin is fragile, the PNDS recommends for example tension-free stitches, with stitches left in longer (about 15 days) and removed gradually.

Local anaesthesia: many people with EDS, especially the hypermobile type, report that local anaesthetics (at the dentist, for minor procedures) work less well, for a shorter time or more slowly. Tell the practitioner in advance: they can adjust the dose, the technique or the waiting time.

On the administrative side, depending on your situation, your doctor can apply for long-term condition (ALD) cover, and the MDPH can grant support and adjustments. Your rights and procedures

A condition that can vary from day to day

EDS can affect many aspects of daily life: pain, fatigue, joint stability, sleep, digestion, concentration or the ability to do certain activities.

These difficulties also vary in intensity: what is possible one day can take much more energy the next.

Rather than a rigid routine, it is about learning to observe how you function and gradually adjusting your organisation.

Spread things out rather than doing everything at once

Fatigue can be very present in Ehlers-Danlos syndromes. Pacing (energy management) means organising activities and recovery time to avoid sudden swings between overactivity and exhaustion.

01 Assess

How do I feel today?

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02 Prioritise

What really matters?

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03 Smaller meals

Can I break this task down?

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04 Recover

Plan a real break before exhaustion.

Important: new fatigue, fatigue very different from your usual fatigue or fatigue that is getting worse should be discussed with a healthcare professional. Fatigue can have several causes and should not automatically be put down to EDS.

The overactivity / forced recovery cycle

On better days, you want to catch up on everything you could not do. Symptoms may then increase over the following days.

1 Good day

“I’ll make the most of it and do everything.”

2 Overactivity

A lot of effort packed into a short time.

3 Worse symptoms

More fatigue, pain or need for recovery.

4 Forced rest

Activities become difficult or impossible.

And the cycle starts again on the next good day

Another approach

Keep a little in reserve

When possible, stopping an activity before you have completely used up your capacity helps you keep energy for the rest of the day.

Reducing unnecessary strain

What helps varies a lot from person to person. It is often about reducing repeated mechanical strain while keeping function as far as possible.

Changing position

Alternating positions rather than staying in the same posture for a long time can be more comfortable for some people.

Adapting your environment

Changing the height of a screen, using a support, keeping frequently used objects close or reorganising a space can reduce some everyday strain.

Asking for support

Physiotherapists, occupational therapists and other professionals can help identify strategies suited to a particular situation.

Activity adapted to the person

Physical activity can be part of care, in particular to maintain function and limit deconditioning. But the amount, type and progression must be adapted to the person.

A simple “do more exercise” is not enough when pain, instability or fatigue are already limiting activities.

A professional who knows about hypermobility can help build a suitable, gradual and realistic programme.

Adjustments can take several forms

An aid is not necessarily medical equipment: small changes can sometimes save a lot of energy.

HOME

Reorganise

Keep useful items within reach, sit down for some tasks or limit unnecessary trips.

MOBILITY

Get equipped if needed

Orthoses, walking aids or other equipment sometimes help people stay independent, if they suit the person’s needs.

ORGANISATION

Smaller meals

Spread a big task over several moments or several days rather than doing it all at once.

THOSE AROUND YOU

Delegate

Asking for help with some tasks lets you keep energy for other important activities.

Pointers for your loved ones

Reducing obstacles rather than giving up straight away

Adjustments sometimes make it possible to continue school, studies or work in better conditions.

Breaks

Planning breaks or spreading out some tasks limits the build-up of fatigue.

Adapted workstation

Chair, desk, screen or equipment can sometimes be adjusted to reduce strain.

Organising time

Depending on the situation, adjusted hours, remote working or a different class schedule can be discussed.

Support schemes exist (in France)

MDPH: the departmental disability office reviews applications for rights and support. Our sheet to prepare your application (in French) ↗
RQTH (recognised disabled worker status): granted through the MDPH, it can help with adjustments to your job or working hours. Find out more ↗
Occupational health doctor: they can suggest workplace adjustments suited to your situation.
At school and during studies: a PAI (individual support plan), a PPS (personalised schooling plan, via the MDPH) or exam adjustments can be requested; at university, the disability service can support you.

All your rights and procedures

Illness shouldn’t isolate you

A chronic illness can make some outings or activities harder, and contact with others sometimes gradually shrinks.

Adapting an activity is sometimes more realistic than cancelling it: shortening it, planning somewhere to sit, choosing a better time, or simply warning people that you may need to leave early.

Talking with people who experience similar difficulties also helps to break the isolation.

That is what the association’s meet-ups and the n’Cie Passport are all about: meeting in person, at your own pace.

A few questions to ask yourself

What costs me the most?

Identifying particularly tiring tasks helps you think about which adjustments to prioritise.

What really helps me?

A strategy that works for someone else won’t necessarily be the best for you.

Where can I simplify?

Some tasks can be shortened, reorganised, split up or delegated.

What do I want to preserve?

Managing your energy isn’t only for obligations: keeping room for important or enjoyable activities is also part of the balance.

Sources and resources

This page is based on the national diagnosis and care protocol for non-vascular EDS, the reference document in France. Vascular EDS requires specific care.

HAS / OSCAR network — PNDS for non-vascular EDS National diagnosis and care protocol, March 2020 (PDF, in French) ↗ PNDS summary for GPs 4 pages to print for your doctor (PDF, in French) ↗ OSCAR network Information on non-vascular EDS and the care network ↗ Haute Autorité de Santé (HAS, French National Authority for Health) National diagnosis and care protocol: non-vascular EDS (2020, in French) → Santé.fr Ehlers-Danlos syndromes (with UNSED) → SED Gastroparésie N’Cie The EDS reference and competence centres → SED Gastroparésie N’Cie Find a professional → The Ehlers-Danlos Society Fatigue in EDS and HSD → The Ehlers-Danlos Society Management and care → NHS Ehlers-Danlos syndromes →

Medical information

The content of this page is provided for information only. It does not replace a consultation, a diagnosis or personalised advice from a healthcare professional. Never change a treatment without medical advice.

An activity, an orthosis, a mobility aid or an adjustment must suit your situation: ask for professional advice if needed.

Share what helps you

Talking with others who are affected often helps you find the right professionals and the best tips. Join the n’Cie, and take stock of your needs with our printable guide.

Become a member Download the sheet (PDF, in French) ↗ Find a professional