vEDS Care Team

A vEDS diagnosis may mean working with a number of doctors to manage your symptoms.

A variety of specialists may make up your care team.

Just like your journey to a diagnosis may involve a variety of doctors, living with vEDS may mean working with a number of doctors to manage the disease. Your signs, symptoms, and medical history will ultimately determine who makes up your care team specialists.

  • Primary care doctorActs as the care coordinator. They will refer you to other doctors who focus on specific symptoms you might have. Ideally, they are linked to a geneticist or other specialist with knowledge of your condition.
  • PhysiatristSpecializes in physical medicine and rehabilitation and creates therapy plans tailored to your unique needs. Physiatrists often work with a team of physical therapists, occupational therapists, and other rehabilitation professionals.
  • Medical GeneticistA medical geneticist can diagnose vEDS. Aside from diagnosis, they can also help you make healthcare decisions, assist in genetic testing, and counsel your family members.
  • RheumatologistWorks with you to spot and manage problems with your joints and connective tissue.
  • CardiologistKeeps an eye on your arteries, and treats conditions related to your heart and blood vessels.
  • NeurologistHelps to treat or manage the neurologic symptoms (such as an aneurysm) associated with vEDS.
  • OrthopedistSpecializes in issues with bones, muscles, or ligaments in your spine, arms, or legs.
  • Cardiovascular surgeonAt some point, you may need surgery. It’s important for you or another doctor to make sure your surgeon fully understands your condition and the delicate tissues they will encounter.
  • Pain specialistFrequent pain may be a part of living with vEDS. A pain specialist can work with you to help evaluate, treat, and manage your pain.
  • OB/GYNIt is important your OB/GYN (obstetrician-gynecologist) understands the unique challenges of your condition, especially if you are pregnant or planning a pregnancy.
  • PsychologistThe impact of vEDS on your mental well-being is often overlooked. A psychologist might be able to help you sort through difficult feelings.

Select a specialist to learn more about how they may work on your team.

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