7 Lessons from the vEDS Facebook Community

One of the most challenging aspects of suffering from a rare disease can be the feeling of isolation associated with it. Many patients with vascular EDS have never met another vEDS patient. It can leave us wondering, are our experiences unique? Who precisely are the people who comprise the vEDS patient population? Recognizing that this information did not exist, an ambitious member of the vEDS community set out to create a survey to learn more. And with that, the vEDS 2017 Facebook group survey was born!

What is the vEDS 2017 Facebook Group Survey?

The vEDS Facebook Group survey was conducted online through members of two vascular EDS Facebook groups. Confidential responses from 81 people who tested positive for vEDS were collected in the Spring of 2017 using Survey Monkey. The survey should not be viewed as a scientific study, but rather a glimpse into the life and mind of patients with vascular Ehlers-Danlos syndrome. What do vEDS patients that completed the survey find important? What do they want to see more of in the vEDS community? What are their frustrations? Some of the most powerful feedback is the individual quotes compiled at the end of the survey summary.

In terms of how the survey was created, it was designed, executed and analyzed independently by a member of the vascular EDS community. That same individual created a presentation summary (Click here for the full PDF); the graphics that accompany it were underwritten by Acer therapeutics.

The FIGHT vEDS Take on the vEDS 2017 Facebook Group Survey:

There are many interesting and thought-provoking findings within the vEDS Facebook survey. Below is a review of what we here at FIGHT vEDS feel are some of the most noteworthy findings from the vEDS Facebook survey. To check out the survey in its entirety you can find it here.

1. vEDS Patients are Nationwide!

View the map below to see where respondents were from and to realize just how wide spread our community truly is.

2. 61% of respondents had living relatives whose vEDS status is unknown

Note: n=109 living parents, n=107 living siblings, n=128 living grandparents, n=110 other living relatives who may have vEDS

What can we learn: Obtaining the diagnosis of vascular EDS is an important step towards improving outcomes. When a diagnosis is known, medical management and other preventions can be started. If such a large number of vEDS patients really have immediate family members who have not been tested for vEDS, then the vEDS community as a whole should work to address and fix this in the future.

3. Over 50% of patients took longer than 1 year to get diagnosed after symptoms

What can we learn: The Facebook survey shows how long it can truly take to be diagnosed. While one-third of respondents noted that it took less than 1 year to be diagnosed, over one-half of patients took longer than 1 year! If this is true of the broader vEDS community (beyond the survey population), there is again room for improvement. Increasing physician awareness of vascular EDS will help lead to quicker suspicion and diagnosis.

4. 51% of respondents have a Cardiologist directing care

What we can learn: Cardiologists were the most common specialty that coordinated the care for vEDS patients in this survey. Knowing which types of physicians are commonly involved in the care of vascular EDS patients can help us to know the best doctors to focus on educating about our unique disease.

5. vEDS patients want an ER Handbook, a list of physicians, and a medical hotline

When asked to vote for the 'top three ideas' that these vEDS patients wished to see in the future, the top three desires were:

i. ‘Handbook for ER’: Emergency instructions for both the Emergency Room Providers and for patients

ii. A list of physicians and specialists: Who have knowledge of vascular Ehlers-Danlos syndrome

iii. A 24-Hour vEDS Medical Hotline