The Pediatric Joint Hypermobility and Ehlers Danlos Syndrome Program at Children’s Mercy Kansas City

The Pediatric Joint Hypermobility (pJH) and Ehlers Danlos Syndrome (EDS) Program at Children’s Mercy Kansas City offers multidisciplinary, coordinated care provided by EDS-knowledgeable providers to families and children with pJH and EDS. A novel clinic design is employed to meet the needs of patients and families through diagnosis and management clinics. The pJH and EDS program is also active in research and educational endeavors.

Pediatric Joint Hypermobility 

Pediatric joint hypermobility can be common in children, but this can change throughout childhood. Children and adolescents with generalized joint hypermobility and other symptoms that include musculoskeletal symptoms such as pain and dislocation of joints, soft, stretchy skin, and other comorbidities that include anxiety, fatigue and bladder disorders can be evaluated from 5 years of age through to biological maturity, which is marked by completion of puberty and bone growth or when they reach 18 years of age. There are eight different subtypes of pediatric joint hypermobility. After skeletal maturity or 18 years of age, individuals can be evaluated for hypermobile EDS. Other subtypes of EDS can be diagnosed with genetic tests.

Ehlers Danlos Syndrome 

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, which may cause individuals to withdraw from their favorite activities. There are many EDS subtypes that can be diagnosed with genetic tests and clinical criteria.

pJH and EDS can be difficult to identify and treat due to the variety of symptoms across many different systems of the body, and the pJH and EDS Program has many pJH- and EDS-knowledgeable providers with experience that can help families with evaluation, diagnosis, and treatment for these complex conditions.

pJH and EDS Clinic referrals

A referral to the pJH and EDS Program at Children’s Mercy is required and may be placed by your child’s primary doctor or specialist. After a referral had been received, you will be placed on a waitlist. The clinic nurse coordinator will review the referral to ensure all available records are received. After everything is received you will be contacted to schedule and coordinate an appointment. 

Additional Referral information

Referrals can be sent electronically to the Genetics Department at Children’s Mercy by filling out our referral form. 

Questions about referrals can be directed to the pJH and EDS clinic at: 816-983-6960.

pJH and EDS Clinic appointments

The pJH and EDS program has a novel clinic design that is used to meet the needs of patients and families. The clinic is divided into two parts, a diagnostic clinic, and a multidisciplinary management clinic. 

Diagnostic visits

Typically, the first visit will be with the diagnostic clinic to establish a diagnosis of pJH or EDS and provide education about the condition. This will usually include evaluation by a geneticist and genetics counselor. They will look at your family history and your child’s medical records to determine appropriate diagnosis and help you get the answers you need. You will also see an pJH and EDS Nurse practitioner to help organize and coordinate initial diagnostic and treatment plans. 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

If your child has a previous diagnosis of pJH or EDS, or the diagnosis is made at the diagnostic visit, then families will typically be scheduled for an appointment with the multidisciplinary management team 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.

Follow-up visits

Some children may not need to follow-up in the pJH and EDS multidisciplinary management clinic, and most will continue care with their primary doctor. However, some individuals will continue to be followed in the pJH and EDS Clinic between visits with their primary doctor. Follow-up visits usually occur with an EDS-knowledgeable nurse practitioner every 6-12 months. There may be a telehealth option available for established children and families (families may inquire if interested).

Integration of education and research into treatment

Our team feels strongly that integration of education and research into clinical care is essential to improve health outcomes. For this reason, you will likely be asked to meet with our research coordinator and take part in one of our education or research studies. Periodically, you may be contacted to participate in education or research endeavors, which is optional and will not impact the direct care your family and child receive.