Care & Support

Practical, everyday support for children and families living with an inherited genetic disorder: what may help, what to prepare for, and who to ask.

This is care education, not a treatment plan

Care & Support explains areas of care that may matter and questions worth asking. It never prescribes treatment, medicines, devices, diets, or exercises, and it does not tell you what your individual child needs. Those decisions belong to your child's care team.

Choose a condition

Care & Support is organised by condition. Choose one to see practical care areas; the system never works out a condition or a care plan for you.

Read the full Ehlers-Danlos Syndrome page

Care areaAgeForSearch

4 care areas

Joint supportEveryday supportYoung childrenGeneral childhood
Joint support awareness
Some people with joint instability may use supportive equipment following individual assessment; it is not automatic.
Braces, splints, compression garments, and mobility aids are never recommended based on the diagnosis alone, only after individual professional assessment.
Why it may matter
Joint support is highly individual. Some children benefit from certain supports after assessment, while many need none. A diagnosis alone does not mean a child needs a brace or device.
Practical considerations
- Supports such as braces, splints, or compression garments are never recommended on the basis of an EDS label alone; they are chosen only after individual assessment.
- Using the wrong support, or using one that is not needed, can do more harm than good.
What caregivers may prepare for
- Care may sometimes involve discussing whether any joint support is appropriate for the individual child.
Questions to ask your care team
- Is any joint support appropriate for our child, or is it not needed right now?
- If a support is recommended, how and when should it be used?
Professionals who may help
Physiotherapist، Orthopaedic specialist، Paediatrician
1 related support item
Joint support device
Brace / splint / supportive garment
Professional assessment required
Joint supportYoung childrenGeneral childhood
What it may be used for: Some people with joint instability may use supportive equipment following an individual assessment. This is not automatically helpful for everyone with a joint-hypermobility label, and is not needed by every child.
This type of support should be selected with guidance from an appropriate healthcare professional.
Safety: Braces and splints are not automatically recommended based on a diagnosis. Using the wrong support, or using it incorrectly, can weaken joints or cause harm. Selection is a professional decision.
Choosing one: If a support has been recommended, ask the treating professional about type, fit, and how and when to use it.
References:
Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society
References:
- Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society
- Ehlers-Danlos syndrome, MedlinePlus Genetics (U.S. National Library of Medicine)
Social supportDevelopment supportYoung childrenGeneral childhood
Activity and safe participation
Many children can take part in activities with individual guidance; the aim is safe participation, not automatic exclusion.
Shared Blood does not clear a child for activity or provide disease-wide lists of allowed or banned activities. Individual guidance comes from a professional who knows the child.
Why it may matter
Whether and how a child takes part in an activity depends on the individual child and professional advice, not on a general list of allowed or banned activities.
Practical considerations
- Individual guidance may depend on the subtype and other factors, so activity decisions are made with a professional who knows the child.
- Adapting how an activity is done, and pacing it around fatigue, can support participation.
What caregivers may prepare for
- Care may sometimes involve adapting activities rather than stopping them, based on individual advice.
Questions to ask your care team
- Should any activities be approached differently for our child?
- How can we help our child stay active safely?
Professionals who may help
Physiotherapist، Paediatrician، Occupational therapist
1 related support item
School accessibility adaptation
School environment adaptation
Non-medical support item
School adaptationYoung childrenGeneral childhood
What it may be used for: May help a child stay included at school around fatigue, appointments, or movement needs. Families share only the information they choose, according to circumstances.
Safety: Share only the care information you choose with appropriate school staff. There is no need to disclose a child’s diagnosis to the whole school.
Choosing one: Most adaptations cost little or nothing and are arranged in conversation with the school.
References:
- Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society
Pain awarenessEveryday supportYoung childrenGeneral childhood
Pain and fatigue awareness
Some children experience pain or tiredness; noticing patterns and discussing them with a professional can help.
Why it may matter
For some children, pain or fatigue may affect daily life. Observing when it happens and sharing this with a professional supports better individual care, without self-medicating.
Practical considerations
- Keeping a simple note of when discomfort or tiredness occurs can help a professional understand the pattern.
- Any pain relief or treatment is decided by a professional, not started at home.
What caregivers may prepare for
- Care may sometimes involve recurring observations of comfort, pain, or energy to discuss at reviews.
Questions to ask your care team
- Which changes in pain or tiredness should we report, and when?
Professionals who may help
Paediatrician، Physiotherapist، General physician / family doctor
1 related support item
Rest and comfort aid
Comfort / rest support
Non-medical support item
ComfortGeneral childhood
What it may be used for: May help some children rest and pace their energy across the day. Ordinary household items usually work well.
Safety: Persistent tiredness that worries you should be discussed with a healthcare professional rather than managed with rest alone.
Choosing one: No special purchase is needed; items already at home are usually enough.
References:
- Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society
- Ehlers-Danlos syndrome, MedlinePlus Genetics (U.S. National Library of Medicine)
School supportEducation supportYoung childrenGeneral childhood
School and daily-life adaptation
Small adjustments at school and home may help some children take part more comfortably.
Why it may matter
For some children, simple accommodations (such as rest breaks or help carrying heavy bags) can support participation and reduce strain, depending on individual needs.
Practical considerations
- Families share only the care information they choose with appropriate school staff, according to circumstances.
What caregivers may prepare for
- Care may sometimes involve communicating practical needs to a school and reviewing them as the child grows.
Questions to ask your care team
- What simple adjustments could help our child take part more comfortably?
Professionals who may help
Occupational therapist، Physiotherapist، Paediatrician
1 related support item
School accessibility adaptation
School environment adaptation
Non-medical support item
School adaptationYoung childrenGeneral childhood
What it may be used for: May help a child stay included at school around fatigue, appointments, or movement needs. Families share only the information they choose, according to circumstances.
Safety: Share only the care information you choose with appropriate school staff. There is no need to disclose a child’s diagnosis to the whole school.
Choosing one: Most adaptations cost little or nothing and are arranged in conversation with the school.
References:
- Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society

Preparing for care

Appointment preparation guide

A generic sheet you can print and fill in at home before a visit. Shared Blood does not save anything you write.

This is a blank template. It does not contain any child's name, diagnosis, or personal information; you complete it offline.

1. What has changed since the last appointment (feeding, movement, breathing, energy, or other concerns)?
2. Questions we want to ask the care team
3. Current medicines to mention
4. Recent hospital or clinic visits
5. Things we have observed and want to discuss
6. Next steps or follow-up agreed at the visit

Preparing essential care information

In case of a flood, displacement, or emergency, it can help to keep key information ready to share with responsible medical staff. Keep it somewhere safe; Shared Blood does not store it.

A simple list of current medicines and any known allergies
Copies of essential records, such as the diagnosis and recent summaries
A short note of the child's major care needs and routines
How to explain the diagnosed condition clearly to relief or emergency medical staff

Joint supportEveryday supportYoung childrenGeneral childhood

Joint support awareness

Some people with joint instability may use supportive equipment following individual assessment; it is not automatic.

Braces, splints, compression garments, and mobility aids are never recommended based on the diagnosis alone, only after individual professional assessment.

Why it may matter

Joint support is highly individual. Some children benefit from certain supports after assessment, while many need none. A diagnosis alone does not mean a child needs a brace or device.

Practical considerations

Supports such as braces, splints, or compression garments are never recommended on the basis of an EDS label alone; they are chosen only after individual assessment.
Using the wrong support, or using one that is not needed, can do more harm than good.

What caregivers may prepare for

Care may sometimes involve discussing whether any joint support is appropriate for the individual child.

Questions to ask your care team

Is any joint support appropriate for our child, or is it not needed right now?
If a support is recommended, how and when should it be used?

Professionals who may help

Physiotherapist، Orthopaedic specialist، Paediatrician

1 related support item

Joint support device

Brace / splint / supportive garment

Professional assessment required

Joint supportYoung childrenGeneral childhood

What it may be used for: Some people with joint instability may use supportive equipment following an individual assessment. This is not automatically helpful for everyone with a joint-hypermobility label, and is not needed by every child.

This type of support should be selected with guidance from an appropriate healthcare professional.

Safety: Braces and splints are not automatically recommended based on a diagnosis. Using the wrong support, or using it incorrectly, can weaken joints or cause harm. Selection is a professional decision.

Choosing one: If a support has been recommended, ask the treating professional about type, fit, and how and when to use it.

References:

Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society

References:

Managing Ehlers-Danlos Syndromes, living and support, The Ehlers-Danlos Society
Ehlers-Danlos syndrome, MedlinePlus Genetics (U.S. National Library of Medicine)

Preparing essential care information

In case of a flood, displacement, or emergency, it can help to keep key information ready to share with responsible medical staff. Keep it somewhere safe; Shared Blood does not store it.

A simple list of current medicines and any known allergies

Copies of essential records, such as the diagnosis and recent summaries

A short note of the child's major care needs and routines

How to explain the diagnosed condition clearly to relief or emergency medical staff

Choose a condition

Joint support device

School accessibility adaptation

Rest and comfort aid

School accessibility adaptation

Appointment preparation guide

Preparing essential care information

Choose a condition

Joint support device

School accessibility adaptation

Rest and comfort aid

School accessibility adaptation

Appointment preparation guide

Preparing essential care information