Take Survey on Gastrointestinal Issues with EDS or CTDs—Expires on 12/31/2014

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Your input is needed for this very important EDS survey!

Follow the link at the bottom of this article to take the survey.

This survey on gastrointestinal issues is being conducted by a group of doctors at Beth Israel Deaconess Medical Center / Harvard Medical School. The goal is to better understand the bowel and stomach issues that might affect patients with inherited connective tissue disorders. In order to do this, they have put together a survey of pertinent questions. We hope that if the research is able to define some of the problems, doctors will be better able to treat these problems. Results from the survey will be published and shared.

 

You could help in two ways:

  1. Please complete this survey at your earliest convenience.
  2. Please post this survey link on your local support group websites, Facebook, etc. Also email it to other EDS patients within your network.

Survey Details:

  • Minimal typing – The survey consists of mostly “check-the-box” questions (depending on your unique patient experience)
  • 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.

We are hoping that you will be able to fill out this survey, which takes about 25 minutes. There is no need to do it in one setting. If you have a spouse or partner with whom you live and who does not have the disorder, it would be helpful if that person could also fill out the survey. If this is something that your significant other and you would like to do, you will receive a randomly generated number. Please send the number to him or her via email. This would allow us to compare the answers between people with the disorder and people without who are living in the same households.  Your partner does not need to fill out the survey and you do not have to send the link to the survey if you do not wish to do so.

Please Click here for more information and to access the survey.

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

 

Sincerely,

Jacqueline Wolf, MD

Sveta Shah, MD

Saikiran Kilaru, MD

Division of Gastroenterology

Harvard Medical School

Beth Israel Deaconess Medical Center

 

NOTE:  Survey responses are anonymous – Your responses are voluntary and will be confidential.  All responses will be compiled together and analyzed as a group.

 

We appreciate your Comments and Likes

 

  • Wendy Swanson

    I was 6 when my first pain started in my legs, diagnosed as “GROWING PAINS”. They became more frequent, and by age 12 I saw the first specialist. I am 53, and have had more operations than I can count, but when the EDS diagnosis came, I stopped all surgery, because the most recent operation prior was to implant then remove a dorsal column stim unit for pain, after it was in for about 2 months. I was allergic to some aspect of it, and it made the EDS much more severe. The EDS never got better, and I had to stop work, driving, and most everything. That was 12 years ago.
    I am just one of 3 diagnosed EDS patients in my immediate family (mom and niece are the other 2), but there are a number of others in my family who have symptoms, and we know in our hearts that they also have it. We have followed the medical family history “tree”, and EASILY found where the EDS came from. 2 of my immediate family members have died of aneurysms, and my maternal grandmother has an abdominal one, that we know will most likely take her life. She is too old to have surgery for it.
    Thank you for this opportunity to help you.

  • i am looking forward to filling the survey

  • julie bemis

    i just wanted to let you know some questions were hard to answer because i had colon cancer and have a colostomy feel free to contact i would love to help with research ehlers danlos has been in my family for 6 generations and still going

  • Nancy Bolduan

    I think this survey is lacking. I have lots of upper G.I. symptoms–but that is because I have Achalasia in addition to Ehlers-Danlos. Also I take opioids for EDS pain and of course that can effect the stool. Also since I have a propensity to have anemia, I take iron supplements–which can also affect the color of the stool. None of these co-factors are addressed. Who ever designed this, I think you might be missing invaluable hints and clues as to what to look for in links between connective tissues diseases and their comorbidities because the questions are so narrow and controlled. I think at the very least you need to have some areas for the survey takers commentary or added details.

  • Bunny

    It surprised me that there were no questions regarding surgeries to the GI Tract. My first colon surgery was at 3 years old and my latest was at age 59. Not sure why surgical he was omitted?

  • Cheryl

    I am so glad someone is finally taking an interest in anal leakage, the topic we don’t discuss and are embarrassed even to share with our physicians. Thank you!

  • Amy Kendall

    Your questions were hard for me to answer as I had my colon removed five years ago after it dimly stopped working, died, and tried to kill me. It seems your questions should have included something that would have included a colonectomy!

  • Elspeth Graham

    The questions about GERD were very confusing to me. I was diagnosed with GERD and hiatus hernia approximately 15 years ago. I’ve been on prescription medication ever since. It skewed my answers, not knowing exactly how to answer. Without medication, I would be in extreme pain 24/7. It would have helped ever so much to include that in the questionnaire

  • TC

    There were 2 questions that were very confusing. 1. When food comes back up into mouth, are you nauseous? (Or something like that) I didn’t know if it was asking if I was nauseous PRIOR to food coming up OR if I was nauseous AFTER the food came back up. It is definitely the latter for me, as I have functional dysmotility and if I bend over the food/liquid will just slide back up!
    2. Oh, I forget the other one, but it was close to the question above and was related to acid somehow and it confused me. Because of meds, I don’t currently have much acid, just functional reflux.

  • Erin

    Interesting survey, though I can’t imagine what info you’d want from spouses. My spouse is nearly my full time caregiver, and he wouldn’t be able to answer questions about my nausea or stool consistency. Not sure any spouse could, so while I did generate a code, I don’t think I’m going to have my spouse take the survey, after seeing the questions.

    The survey covered a lot of diagnoses and symptoms, but really did not seem to get how interconnected and systemic something like EDS is. My stomach reporting full too early (on less than a “regular” sized meal) is a huge problem for me, but there was only one question on it, not even a follow up. I have all the IBS symptoms, but what really gives me trouble is when the bloating and dissension get so bad that it starts pushing on and subluxing my ribs from the inside — which for me happens 1-3 times per week and causes serious pain, but again was barely acknowledged by the survey.

    This survey felt like it covered too much ground and didn’t get into depth on the actual lived experience of digestive issues with connective tissue disorders. I’m sure I miss-answered some questions about abdominal pain, because I was thinking about the rib subluxing painful from bloating, only to find that addressed in ONE question later on.

    My IBS symptoms are one of those things I don’t even mention on a usual doctors visit, since there are so many other more pressing symptoms. I had hoped that this survey would be more tailored to the actual experiences of people with EDS, and not read just like a doctor’s useless in-take form.

  • Maria Cantarero

    My husband has undifferentiated connective tissue disease and a life time of gastro problems. I have Ehlers-Danlos with gastro problems that come and go. I just learned about this survey (November 16) — is it too late to participate?

  • Watts

    I also have EoE along with EDS and responses about swallowing, esophageal tearing, bleeding, nausea, etc., were likely different for me than other EDSers due to my second dx.
    Also, I would have liked the option to mail my responses to my physician. My GI doctors have never asked me such thorough questions about what my issues really look like. I found myself wondering if my answers looked diagnosable as something and wishing a doctor could tell me. I went in to a GI for chronic diarrhea 7 years ago and came out with an EoE diagnosis. I’ve never been satisfied with that. I’m just now figuring out that it is EDS.

  • I have Achalasia and megaesophagus, I have long thought it was part of some type of syndrome. I have been diagnosed with fibromylagia, chronic fatigue and often dismissed by physicians. My daughter is now being tested for EDS and the doctor suggested I get testing also. I am interested in finding out more correlation between the disorders. Since being diagnosed with Achalasia I was always told that they have no idea why people get the disease.

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