Ehlers-Danlos syndrome, Classic type (type I)

There is no cure for Ehlers-Danlos syndrome (EDS) in 2016. There are several treatments used to help reduce or manage the health problems seen in EDS. However, because EDS is not just one disorder, but several distinct disorders, treatment options will be very different among affected individuals. This is true even for people with the same diagnosis. Common treatment options are braces, canes or other devices that can help support joints, pain medications, physical and occupational therapy, and wearing protective clothing or gear particularly over pressure points like the elbows or knees. Surgery may be recommended to treat specific complications like the curvature of the spine or certain cardiovascular problems. There are also several new treatments being tried in research studies that could work in EDS, but there is no FDA-approved therapy of this kind at this time.

There is no cure for Ehlers-Danlos syndrome (EDS). Doctors treat the specific symptoms that each individual develops. Because EDS is a group of disorders and they can cause different problems in different people, it is hard to make broad generalizations about treatment. Each individual or parent of a child with EDS will need to work with their doctors and entire medical team to develop a highly individualized treatment plan that is best for their particular situation.

Physical and occupational therapy can be very beneficial as they help to preserve the joints and strengthen muscles. These therapies are used to help children with low muscle tone and delays in developing motor skills. Low resistance muscle toning exercise can help to improve joint stability. Some doctors may recommend braces to stabilize loose joints. Some people may need to use a cane or similar device when walking. Precautions should be taken to protect children from injuries or trauma. This include avoiding contact sports or similar activities. Activities that are non-weight bearing, such as swimming, are recommended to build muscles and improve coordination. Children are encouraged to wear protective clothing or padding to protect the shins, knees, elbows, and other pressure points.

Some doctors may recommend pain medications such as anti-inflammatory medications for joint or chronic pain. Ascorbic acid (vitamin C) may reduce bruising.

Some people with EDS may need to see a heart doctor regularly. This includes people with EDS, vascular type and to a lesser degree EDS, kyphoscoliosis type and EDS, classic type. These people are at risk for spontaneous rupture of blood vessels or organs. These people are encouraged to see a doctor immediately if they have sudden, unexplained pain. Some people may need surgery to treat these complications.

Some people with Ehlers-Danlos syndrome may need to see a heart doctor regularly. This includes people with EDS, vascular type and to a lesser degree EDS, kyphoscoliosis type and EDS, classic type. These people are at risk for spontaneous rupture of blood vessels or organs. They are encouraged to see a doctor immediately if they have sudden, unexplained pain. Some people may need surgery to treat these complications. Medications to lower blood pressure may be used if blood pressure is high. This will reduce stress on the blood vessels.

People with EDS who are at risk for cardiovascular complications should have a heart doctor, a cardiologist, on their medical team. They should develop a treatment and surveillance plan to best manage their symptoms. People who are at risk for these cardiovascular problems are encouraged to carry something with them at all times that documents their diagnosis such as a MedicAlert bracelet.