Updated: Dec 30, 2021
When I was first diagnosed, like most people I knew nothing about vascular Ehlers-Danlos.
Similarly, many of the doctors who first diagnose vEDS aren't experts either. I learned quickly that establishing the right network around me - both for personal support as well as medical support is absolutely critical.
Despite the importance of developing the right team of doctors, too many vEDS patients do not have a Care Team that makes them feel comfortable. At this summer's vEDS Collaborative meeting, Dr. Peter Byers spoke about how to develop a great Care Team. For newly diagnosed vEDS patients, this can be a blueprint for how to assemble an exceptional team. For those of us with a team in place, it can be a healthy "check-up" to make sure we've got a best-in-class team and plan. Below is the FIGHT vEDS perspective on building your Care Team, based on expert opinion from Dr. Byers and others.
Background: What is a Care Team?
Before we dive in, we should clarify what we mean by a "Care Team". A Care Team is the set of doctors that work together to make sure you have the right treatment plan in place to manage your vEDS. There's typically one doctor who "coordinates" care, meaning they are the primary person who makes decisions and shares information with the other doctors. This is often, but not always, a Primary Care Physician (other doctors like Cardiologists or Vascular Surgeons can play this role too).
Depending on your particular medical needs, you may also have other physicians on your Care Team including geneticists, surgeons, or medical doctors (e.g., Cardiologists, Pulmonologists).
The Four Essential Elements of your vEDS Care Team:
When thinking about building your Care Team, Dr. Byers identified four essential things to consider:
1. Care is local: The majority of your care will always be local. Even if you have the opportunity to travel to a center with vEDS expertise (e.g., University of Washington, Johns Hopkins, University of Texas Health in Houston), the majority of your care will take place with your local team. It's essential to have a strong local team. At the heart of a good care team is a skillful Primary Care Provider. As we've said, other doctors can be the central physician in your care team, but it's critical to have someone you trust, who has worked to understand vEDS, than can act as your "quarterback" and coordinate the team.
2. Communication is vital: Vascular EDS is a complex condition and treating it is a team effort. The picture below shows you the way your physicians might interact. At the center is your Primary Care doctor, with other specialists (that you might need) communicating not only with your Primary Care doctor, but with each other as well. Good communication between your physicians will help optimize your care.
Example: Care Team Communication
3. Create a plan for the ordinary: Work with your Care Team to make a plan for your routine care - the things you can prepare for and you know to expect. This might include discussions about:
How often to see each doctor in the Care Team
When and if to get periodic scans of blood vessels
What blood pressure to maintain
What medications you should be taking
Healthy habits to adopt
Any other routine items that you can plan ahead for
Having a plan for the ordinary ensures that you and your team are taking care of all the things you can control. Having a good plan for the ordinary may actually limit the number of "surprises" that make caring for vascular EDS more difficult.
4. Create a plan for the extraordinary: Unfortunately, regardless of how well we plan ahead, vEDS patients may find themselves in emergency situations. How well prepared we and our Care Team are can be the difference between life and death. With your Care Team, you should develop a comprehensive plan for those circumstances you can't predict. Many plans for the "extraordinary" will consider:
Which Emergency Department will I go to?
In the event of an emergency, which doctors will you and your family notify immediately?
How will you make the Emergency Department aware of your vEDS if you cannot communicate it to either the paramedics or Emergency Room staff? Some patients prepare by:
Wearing a medical alert bracelet
Creating an alert within the local hospital's Electronic Medical Record stating that they have vEDS and what that means for the hospital staff
Contacting local paramedics so that when EMS is called to the patient's home, paramedics get an alert stating that a vEDS patient lives in the home (and what precautions to consider)
Creating an exceptional Care Team can go a long way in improving your physical (as well as mental) health. For more information about Care Teams, visit FIGHT vEDS Care Team page here: Physician Care Teams. FIGHT vEDS also has a list of vEDS experts that we've identified across the country, which can be good places to start, listed here: Find a Doctor.
FIGHT vEDS is currently creating a program to help vEDS patients with confirmed diagnoses develop a great Care Team. Be sure to subscribe to FIGHT vEDS for updates, including when this program becomes available.