Ehlers-Danlos Syndrome: How to Care for Your Child

Kids with Ehlers-Danlos syndrome can have problems with their skin, joints, and other parts of the body. Although there is no cure, treatment can help with pain, keep the joints as healthy as possible, and prevent new problems.

Ask your health care provider if your child needs to: 

• Avoid deep tissue massages and yoga.

• Avoid certain medicines such as aspirin (Bayer^®, Bufferin^®, or a store brand) and ibuprofen (Advil^®, Motrin^®, or a store brand).

• Cover areas of the skin with bandages or pads.

• Wear a medical alert bracelet or necklace.

• Increase salt in their diet and avoid standing up too fast from a sitting or lying position. 

To protect joints, your child should:

• Stop any activities that cause pain.

• Immediately ice any joints that "pop" in and out. That night, apply heat to the joints before your child goes to bed.

• Limit or avoid activities that can injure the joints, such as running, climbing stairs, weightlifting, gymnastics, ballet, and cheerleading.

• Choose low-impact activities, such as walking, swimming, biking, and tai chi.

• Do any exercises that their physical therapist recommends and follow their instructions for taping around joints or wearing any braces or splints.

To help with pain, your child can: 

• Take acetaminophen (Tylenol^® or a store brand). Follow the instructions on the label for how much to give and how often.

• Soak in a hot bath in the morning and before bed.

If your child feels anxious, they can:

• Try meditation and deep breathing.

• Talk to a counselor or other mental health care provider.

Your child has:

• pain that gets worse

• anxiety that affects their everyday activities, like eating, sleeping, and going to school

• snoring

• daytime tiredness

Your child has:

• a sudden, new pain (including chest pain) 

• bleeding that can't be easily stopped by applying pressure

• trouble breathing

• changes in vision

• dizziness or passes out

What causes Ehlers-Danlos syndrome? Experts don't know the exact cause of Ehlers-Danlos syndrome, but most people with the condition have abnormal collagen. Collagen is a protein the body uses to make connective tissue. Problems with collagen can weaken the connective tissue in the skin, bones, tendons, ligaments, blood vessels, and eyes. 

What are the symptoms of Ehlers-Danlos syndrome? Most people with Ehlers-Danlos syndrome have problems with their skin and joints. They may also have tiredness (fatigue), poor wound healing, skeletal differences, and slow emptying of the stomach after eating. They can develop problems such as a drop in blood pressure when moving to a standing position, which can lead to dizziness and passing out, eye issues, and a rupture (tear) of a blood vessel or organ wall that leads to bleeding and can be life-threatening.

How does Ehlers-Danlos syndrome run in families? Usually, a person with the condition inherited the changed gene (mutation) from one or both parents. Less often, someone gets it when the gene change happens on its own (and was not inherited from a parent).