Living With Ehlers-Danlos Syndrome

What is Ehlers- Danlos Syndrome?

According to The Ehlers-Danlos Society, Ehlers–Danlos Syndrome (EDS) is a group of 13 heritable connective tissue disorders. This genetic disorder affects the body’s connective tissues and each type has its own genetic cause. All types of EDS have their own distinct features, but some features are noted to be the same across all types of EDS, including joint hypermobility, tissue fragility, and skin hyperextensibility. EDS is characterized by symptoms that include stretchy, or “velvety soft” skin, hypermobile joints, and tissue fragility. Possible complications of EDS can range from skin fragility to cardiovascular or organ problems. Fortunately, many of the complications of EDS can be managed with specialized medical care and treatments. While a cure for EDS is not yet available, research is ongoing, and we are getting better at managing the chronic conditions associated with EDS.

What is Hypermobile Ehlers-Danlos Syndrome?

Hypermobile Ehlers Danlos Syndrome (hEDS) is a complex, collagen related condition that is diagnosed based off of specific criteria, usually performed by a genetic specialist so that they can rule out other collagen related disorders. A geneticist can also order bloodwork to rule out some of the rarer types of EDS that may have higher risk of mortality, such as vascular EDS, once EDS is diagnosed. Comorbid conditions like joint instability, chronic pain, fatigue, POTS, and MCAS, and vagus nerve dysfunction are sometimes present. An effective diagnosis of hEDS will provide a better understanding of the condition, as well as access to support and treatment. Ultimately, characterization and diagnosis of hEDS is an important part of understanding its clinical presentation, management and how it can affect patients’ lives. At Renew Health & Wellness we strive to help patients with EDS live their best life by empowering them to manage their chronic conditions in a supportive environment. Abigail Butterfield, APRN was diagnosed with EDS and POTS in 2009, and she truly understands the struggles of navigating the healthcare system while living with a chronic/invisible illness. Her goal is to provide superior care to her patients to help them reach their health and wellness goals and she will also provide referrals and collaborate with other specialists when needed.

How is Ehlers-Danlos Syndrome Treated?

The best options for treating Ehlers-Danlos Syndrome (EDS) depend on the type of EDS being treated. Here are some common treatment options for each type of EDS:

Hypermobile EDS: Treatment for hypermobile EDS typically focuses on the management of chronic pain and support for joints. Physical and occupational therapy, anti-inflammatory medications,  exercise, and lifestyle changes can help. Non invasive vagus nerve stimulation can be very helpful to treat and prevent chronic migraines and Botulinum toxin injections can help reduce muscle spasms and joint instability. Abigail Butterfield, APRN can help discuss which treatment modalities may be best for you.

Classical EDS: Treatment for classical EDS focuses on supporting the joints and preventing injury. Physical therapy and posture management can help to reduce pain, as well as bracing and splints to support joints during movement. Surgery can help to repair dislocated joints and weakened connective tissue.

Vascular EDS: Treatment for vascular EDS focuses mainly on preventing aneurysms or other complications. Blood pressure medications and lifestyle modifications can help to keep blood pressure levels in check and reduce the strain on the vascular walls. Regular medical checkups to monitor for any signs of additional damage to the blood vessels or other organs are important.

Kyphoscoliosis EDS: Treatment for kyphoscoliosis EDS typically focuses on spinal and scoliosis management. This can include physical and occupational therapy, exercise, bracing, and supportive devices. Surgery can help to reduce pain and improve positioning.

Each type of EDS can also benefit from complementary treatments such as psychotherapy, massage therapy, and certain medications to reduce joint pain and inflammation. Stress management and nutritional counseling can also help to control symptoms. Ultimately, the best treatment approach will depend on the individual’s symptoms and care preferences, so it is important to work closely with health care providers. At Renew Health & Wellness we provide care to Florida residents via telehealth. In office appointments are also available by appointment.