Ehlers-Danlos Syndrome Clinic

Children’s Mercy offers a clinic for families of children with Ehlers-Danlos syndrome (EDS). This clinic allows you to see a geneticist and genetic counselor, cardiologist with cardiac electrophysiology expertise, rheumatologist, physical therapist, psychologist, social worker and nurse coordinator, all in one visit.

Diagnosing EDS in children

Ehlers-Danlos syndrome is a genetic disorder that affects the connective tissues in the body. Symptoms can vary widely, but often include joint flexibility, chronic pain, muscle weakness, stretchy skin and easy bruising. Additional symptoms are broad and can include dizziness, fatigue, upset stomach, nausea, constipation, and headaches. Often, mental and physical symptoms may worsen with stress or illness. This may cause children to withdraw from their favorite activities.

EDS can be difficult to identify due to the variety of symptoms across many different systems of the body. The Children’s Mercy EDS Clinic team has extensive experience in helping families with evaluation, diagnosis and treatment plans for this complex condition.

What to expect at your EDS Clinic appointment

After your child’s primary doctor or specialist refers them to the EDS Clinic at Children’s Mercy, they will be placed on a waitlist. The clinic nurse coordinator will call you to schedule and coordinate an appointment. The visits can easily last several hours depending on specific needs and any additional testing, so we ask that families come prepared to spend much of the day with us.

The EDS Clinic is focused on meeting the needs of children and families, which are unique to each family’s situation. Our clinic is divided into two parts: diagnostic and management.

Diagnostic visit

Your first visit will usually be with the diagnostic portion of the clinic to establish an EDS diagnosis and provide you with education about the condition. We look at your family history and your child’s medical records to determine appropriate diagnosis and help you get the answers you need. In some cases, additional tests may be required. These may include genetic and laboratory tests, imaging studies such as X-rays, and heart evaluation (EKG and echocardiogram).

Management visits

Most families will then be scheduled for another appointment with the management portion to focus on specific concerns, symptoms, and needs. This saves your family time and travel and allows the team to meet your family’s individual needs with fewer visits. This also allows your family to absorb information about the diagnosis and then attend the management portion with a better understanding of the diagnosis. We find this helps us to focus more on specific issues that need to be addressed and work with you to create a plan of care.

Integrating research into treatment

Children’s Mercy is the first facility in the region to offer a collaborative clinic for children with EDS and their families. Our emphasis on integrating education and research into treatment is a key component of this clinic. Your family may be asked to meet with our research coordinator or take part in one of our research studies as part of your visit.

Most children will continue care with their primary doctor in between visits to the EDS Clinic, which are generally every 6-12 months.