EDS is something you are born with but symptoms may not manifest themselves until later in life. It is not uncommon for a genetic condition to first become apparent during puberty, alternatively symptoms can be triggered by a trauma, such as a virus, many years down the line. A lot of children with EDS are ‘mild’ and their symptoms might go unnoticed. Sometimes children are severely affected.
Children with hypermobile EDS will be more ‘bendy’ than their peers and this hypermobility can cause problems. Instability of the joints might lead to dislocations or subluxations (partial dislocations), children may suffer from pain, their joints may click, and they may fidget to relieve discomfort. EDS is more than just symptomatic hypermobility, however, as it can affect many functions of the body. A child is likely be prone to injuries, easy bruising and their skin may tear after minimal trauma, with injuries taking longer than usual to heal. They may also have poor stamina, and digestive or bladder issues. In school, they could experience difficuties with writing or sitting for long periods, be fidgety, tire quickly, and have poor concentration. Mobility problems and reduced strength will make carrying heavy bags and books harder. Of course, each child will be affected differently.
The challenge is to meet the needs of the child with EDS without them feeling they have been labelled as different to their peers. It is important that they try to lead as normal a life as possible and are encouraged to participate in physical education and activity, so long as it doesn’t cause undue stress to joints/ligaments or pose a high risk of injury. Swimming, for instance, will be a better choice of exercise than contact sports. If the EDS is severe or if a child has one of the rare types then a school Care Plan will be needed.
Your child and the Ehlers-Danlos syndromes
Valerie Burrows, Founder Emeritus, EDS UK
A personal look at day-to-day living for families with children who have EDS. Precautions to take, activities to encourage and dealing with your child's school.
Gastrointestinal problems in children with Ehlers-Danlos syndrome
Mr Jonathan Sutcliffe, Consultant Paediatric Surgeon, Leeds Teaching Hospitals Trust & Mr David Crabbe, Consultant Paediatric Surgeon, Leeds Teaching Hospitals Trust & Angela Hunter, Speech and Language Therapist (retired) and trustee, EDS UK
Some of the digestive disorders that can occur in children with different types of EDS, how common they are and what can be done.
Video: Living with vascular EDS – a parent’s perspective
Victoria talks about her own experience of having a child with vEDS.
Video: Your child and EDS
Dr Brad Tinkle, Clinical Geneticist and Division Head of Clinical Genetics, Advocate Children's Hospital, Chicagoland, USA
An overview of the Ehlers-Danlos syndromes in children.
Teens and autonomic dysfunction
This booklet produced by the Mayo Clinic is aimed at teenagers but useful for anyone suffering with autonomic dysfunction. It explains what postural tachycardia syndrome is and gives tips on how you can feel better.
For more information surrounding this booklet contact Mayo Clinic http://www.mayoclinic.org/