Building your team of doctors to help manage your symptoms will be unique to you. Here are some questions to consider.
What does a vEDS team look like?
You may work with the following doctors, depending on your symptoms:
- Primary care doctor
- Pain specialist
- Cardiovascular surgeon
Help your specialist see the whole picture
Specialists focus on their particular area of knowledge, but might not always think about how a procedure or treatment will affect other parts of your body.
Because vEDS is so rare, you may need to explain to each of your doctors how it affects every part of your body. It might help to record your symptoms in a diary so you can refer back to it during doctors' appointments.
"Before I moved and got involved with my current team, I had a team of doctors who just focused on their specialty. So the colon specialist only saw the colon, and didn't take my kidneys or anything else into account."
How will your doctors stay up to date on your health and medical procedures?
Talk to your doctors. See if they will be able to stay in touch with each other, or if you will need to act as a go-between.
"I have to call three or four different offices at the hospital to make sure that everyone's synced up."
"I have many different doctors, and they actually come together to collaborate on my health."
Who will be your care team leader?
While some patients put themselves in this role, others may be more comfortable assigning one of their doctors to make decisions on their behalf.
"My children and I have the same primary care doctor. She's our gatekeeper."
"My cardiologist is great, but she works at a giant hospital, and she's really hard to get a hold of. So I have to stay on top of things myself."
"My vascular cardiologist has the final say over medical procedures. So if, for instance, my orthopedic specialist thinks I'll need arm surgery, he'll take the time to check in with my cardiologist first."