Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient – Ends Nov. 10

SurveyXSmallYour input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey by November 10th.

My name is Linda Tao and I am currently studying at Harvard Business School (HBS).  I am conducting a research project on a “Multi-disciplinary approach to EDS,” a topic that I am incredibly passionate about because I am an EDS patient and I believe that early diagnosis and correct methodology can significantly improve our quality of life.

Many EDS patients go undiagnosed for multiple years or receive the wrong diagnosis.  That is only the start of a journey involving multiple disciplines of medicine as new symptoms and associated diseases/conditions arise.  The patient experience is challenging, and the patient is often left to navigate the system on his or her own.

The reason I am reaching out to you is because I am hoping you could provide me with input for the key area of my research: Understanding the patient path to diagnosis and treatment/management (from the patient’s perspective).

You could help in two ways:

  1. Please complete this survey by Friday,  November 10th 
  2. Please post this survey link on your local support group websites, Facebook, etc. Also email it to other EDS patients within your network.

Research goal: A roadmap for EDS patient diagnosis and care

The goal of this research survey is to synthesize the EDS patients’ perspective on the current path to diagnosis and treatment/management in a roadmap. This roadmap can be a tool to assist existing patients by identifying most helpful treatment/management methods or most frequented disciplines of medicine.

I will be coordinating with the various EDS organizations to bring this to physicians with the hopes that this will impact the way physicians and the medical system treat EDS patients.  But, for the first phase, I am hoping it will at least provide the necessary information to guide EDS patients through the medical system.

I am fortunate that HBS has a strong healthcare focus with renowned professors like Regina Herzlinger, and I am privileged to have Kevin Sharer (former CEO of a multi-billion dollar pharmaceutical company) as my research supervisor.  These mentors are providing guidance and insight into this research, and will help me craft my perspective and action plan.

Thank you for taking the time to participate in this important study on EDS and I look forward to sharing the results.

Survey Details:

  • Minimal typing – The survey consists of 30 to 38 questions (depending on your unique patient experience)  The majority are “check-the-box” answers.
  • You may take breaks –  At any point in time before completing the survey, you can exit by closing the window.  Your incomplete results will be saved automatically and you can re-open your survey through the link.

Sincerely,

Linda Tao

Click here for the link to this Harvard survey

NOTE:  Survey responses are anonymous – Your responses are voluntary and will be confidential.  All responses will be compiled together and analyzed as a group.  If you are interested in continuing with this research and would like to provide more information, please select that option at the end of the survey.

  • Debbie Linzer

    Linda, hi
    I started to respond to your study and then stopped because your questions do not work for me. Your research is very interesting to me having addressed similar issues when I worked in public policy in public health focusing on people with special health needs. Specifically, my first related diagnoses (gastrointestinal/IBS) is not the reason why I pursued my HEDS diagnosis (unrelenting fatigue) which I received about 3 years ago. I am now 63.
    Good luck to you.

  • Carla Berry

    Glad you’re doing the research, and impressed that Harvard is allowing this as business research.

    Found it difficult to stay focused on the questions through the many parts that required answers. [Would have been able to answer more easily if each of the parts were made a topic area, with answer choices including, e.g., learned about this through… medical doctor, own research; found it ineffective, effective; have used it this many times in the past 5 years.]

    Was not sure I was answering some correctly as I know my parents received some medical guidance when I was very young (I remember wearing special shoes w/braces up to my knees, but don’t know any details [parents no longer living]).

    Feel my answers could be misleading about services in a particular country because, although I have lived in Australia for almost 27 years, I lived in the USA for 31 years before migrating.

    I learned some things from your survey; e.g., googled ‘back buddy’ ~ looks interesting. Thanks for mentioning it.

    Hope these points help with future research design.

    Good luck with your research, warm regards, and I wish you the best of health,
    Carla

  • Lynne Bruger

    As a subscriber to EDSAwareness.com I received the invitation to participate in your survey. However, I am not a patient, but rather lost a loved one to EDS. My friend, Courtney, had Type IV / vascular EDS and she was not diagnosed until, at age 34, she developed a blood clot and fistula in her leg that they were unable to repair surgically due to her compromised veins. We knew right away that she had a “connective tissue disorder” but she had to endure a below the knee amputation and 6 month hospital stay before getting the DNA confirmed EDS diagnosis. Just days after her first hospital stay, her colon ruptured and she was back in for another 3 months. She then had about 15 months without complications, but died suddenly in her sleep due to an aortic rupture last August. She was 36. I don’t know if this applies to your research at all, but as Courtney is not here to tell her EDS story, I’d be more than willing to communicate with you about what I know of her experience – anything to help raise awareness for this awful condition. Feel free to email me at lbruger@cumacecho.org

    And even if this does not apply – thank you for the work that you are doing!

  • Kris Courtney

    Thanks for doing the survey – I did it and have some comments

    You can do it even if you have not had a formal medical diagnosis yet.

    I would advise to do it on the PC not the phone as when it gets down to the details you need to scroll a lot and tick a lot of buttons which is hard to do on the small screen. (And even a bit of a cognitive challenge on the laptop actually when you can’t see the headings.)

    It takes about 30 mins and is very good overall – it gets hard to remember all the points at question 29-31 on.

    There was no room for ANY comments anywhere which was a bit of a let down as I had comments to make and points to clarify at the end. For one the co-morbid condition list could have been enlarged IMHO.

    But overall a very good effort at a survey and it is great to see someone at Harvard is taking a serious interest in EDS.

    To read more symptoms and learn more about EDS this link is very helpful and is updated daily with new links to clips and information.

    http://forum.notcrazy.net/index.php?topic=9571.0

    thanks again for doing the survey – much appreciated

  • Maria Ekstam

    Good luck

  • Erin

    hope i can help!

  • D.Re.

    Was filling out but did not understand #26. Plus there were far more questions than 38, too much clicking, discarded test at #28

  • Nathalie Noel

    I have EDS type 3 and am 37 years old. The more doctors learn about our condition the better our live will all be. A lot of EDS’ers look young and perfect on the outside. This confuses doctors into thinking we are drug seekers. In reality we are in extreme pain!We age inside and outside very differently then normal people. Going to my doctor with joint pain and chronic pain all over not being able to be touch by other people was awful!!! It took many attempts to get a doctor to believe me! At least 10 times I was sent home with no pain meds at all even my own husband at first didn’t understand! 🙁 One day the pain was sooo unbearable I couldn’t stop screaming in the bath tub. My husband did lots of research and at that point he knew more about EDS then me. He took me to my family doctor and demanded that I see a rheumatologist. Finally he gave in and made a request. At that point he started me proper meds for my joint pain. It took a 1 year wait time to see a rheumatologist. He DX my with EDS type 3 9/9 on the beighton scale. Then I was sent to CHEO to a genetics that also took 1 year wait time. She also agreed with my EDS type 3 dx. Honestly it shouldn’t have taken 36 years to be dx with this dease I suffered a lot in my life and had to suck it all up. As the saying goes… “Don’t judge a book by the cover.” “Don’t judge a person just by the way they look on the outside!” I am 37 years old I have been carded when I by drinks. I am 37 but I look not a day past 23! Please tell doctors not to judge people by the way they look on the outside! For this reason I was turned away from treatments way too many times. Suffering in silents is not a life anyone should live!

  • Darlene

    Hope this will help you get a better understanding of what we with eds go through…. There is not a lot of understanding of our issues.

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