Ehlers danlos syndrome symptoms & causes in children

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

Contact Us

Types of Ehlers Danlos syndrome

There are six major types of EDS. All types affect the joints and most affect the skin.

  • Hypermobility
    • the most common type
    • caused by mutations in two different genes
    • formerly called type III
  • Classical types I & II
  • Vascular (type IV)
    • most severe type
    • life expectancy is 48 years
  • Kyphoscoliosis (type VI)
    • fewer than 60 cases reported worldwide
  • Arthrochalasis types (VIIA & B)
    • about 30 cases reported worldwide
  • Dermatosparaxis type (VIIC)
    • the most rare of all six types, with only 10 cases reported worldwide

What causes Ehlers Danlos syndrome?

If you child has Ehlers Danlos syndrome, she has inherited at least one copy of an altered gene. Some types of the disorder result from a genetic defect that disrupts the baby's body's ability to make collagen, a primary component of connective tissue. This causes the child to have joint pain and other symptoms of the disorder.

What are the symptoms of Ehlers Danlos syndrome?

The symptoms of EDS vary depending on the type of disorder, and can range from mild to life threatening. Some of the common symptoms include:

  • hypermobility in the hands, fingers and toes
  • loose joints that are prone to sprains, dislocations and double-jointedness
  • flat feet
  • a high narrow palate with dental crowding
  • pale, smooth skin that bruises easily
  • skin that stretches easily
  • wounds that don't heal easily and with abnormal scarring
  • hernias
  • myalgia and arthralgia
  • muscle weakness, especially when cold
  • early onset osteoarthritis

Some of the less common symptoms include:

What are the complications?

People with EDS, especially the kyphoscoliosis type, are more prone to osteoporosis and eye problems. Other types may increase the risk of developing gum disease and mitral valve prolapse, a heart condition in which one of the valves in the heart does not close properly, which affects the flow of blood and the delivery of oxygen to throughout the child's body.

Can a child with EDS be physically active?

Children with EDS are encouraged to do non-weight bearing activities, such as swimming, which does not tax the joints. Repetitive activities, like weight lifting, are discouraged. Push-ups and other exercises that require pushing with the palm of the hand can cause fingers to hyper-extend and are therefore not recommended.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944