7 Lessons from the vEDS Facebook Community

June 12, 2018

 

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

 

What can we learn:  At FIGHT vEDS, our takeaway from this response is that patients want answers and more information.  They would like to know what doctors have experience in vEDS, what they should do in emergency situations and whom they can contact when emergency questions come up.

  • Interestingly, in this survey the above responses were answered more often than both a national society and a patient registry. Many people believe that establishing a patient registry is fundamental to advancing research in rare diseases—and count FIGHT vEDS in that group!  In the coming months we will publish a blog post explaining the purpose and benefits of having a patient registry.  Hopefully we can convince more members of the vEDS community just how important establishing a patient registry is to advancing research in vEDS!

6. The biggest frustrations among vEDS patients include (a) finding knowledgeable doctors and (b) having more avenues for support

 

What can we learn:

  • Some of the same issues were brought up again in this section of the survey—patients seem to want to know where they can find providers that have experience and understanding in the management of vEDS. FIGHT vEDS continues to expand our list of physicians with experience managing vEDS patients.  Any physicians on this list work with vEDS patients and therefore should be more aware of the problems and issues that are unique to the disease.  If you have additional physicians who you feel should be added please contact us so we may add them!

  • Patients continue to want more avenues for support and to connect with other members of the vascular Ehlers-Danlos syndrome community.  We at FIGHT vEDS will continue to work with leaders in the vEDS community to establish this.  For now, some ideas include:

    • The FIGHT vEDS Forum: this forum is dedicated to vascular Ehlers-Danlos syndrome.  Interact with other members of the vEDS community—ask them questions and get answers!

    • vEDS Facebook Groups:  There are several vEDS specific Facebook groups.  While many of them are private for obvious reasons, "Vascular Zebras" permitted us to use their name-- check them out if you haven't.

    • Online Resources: Many patients noted their desire to attend conferences that were too expensive or too far away.  While this may unfortunately be the case, we will work with leaders in the vEDS community to have video recordings of as many events as possible that can then be shared with those that cannot make it.  Check out our videos page to watch vEDS relevant videos—this includes several from the the Texas vascular EDS family meeting in April 2018 sponsored by Ryan’s Challenge!

Please feel free to contact FIGHT vEDS with questions or comments regarding this survey.  Be sure to encourage members of the vEDS community to subscribe to FIGHT vEDS.  We will keep you up to date on all news, events and research within the vascular Ehlers-Danlos syndrome community.

 

Click Here to subscribe to FIGHT vEDS to get email updates on vascular EDS

 

The FIGHT vEDS Team

 

 

 

Acknowledgements:

  • Special thanks to Kelley Devaney who helped organize and execute the vEDS 2017 Facebook Group Survey

  • Acer Therapeutics: For creation of the PDF and the accompanying graphics

 

 

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