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Discussion in 'Surveys and Studies' started by hugforme, Mar 16, 2008.

  1. hugforme

    hugforme New Member

    Mar 16, 2008
    Hi everyone! I'm a graduate student in clinical health psychology (and fellow type 1 diabetic) and I"m writing my dissertation about "diabulimia" which is a new phenomenon where people with diabetes will intentionally under-dose (or omit) their insulin to help lose weight. I'm still designing my research study and I was wondering if anyone had input about the kinds of questions I should be asking. As parents, friends, and loved ones of those who have diabetes, what would you be interested in learning in regards to this phenomenon. Thanks so much!
  2. Ellen

    Ellen Senior Member

    Oct 22, 2005
    It's nice you're pursuing this very important topic. Know, however, this is not a new phenomenon. I recall nearly 20 years ago sitting in a diabetes support group when a teen in the group talked about how she learned at diabetes camp, some years back ,she can lose weight by omitting insulin.

    It would be interesting to know what comments were made by family/friends that may have triggered the onset of the diabulimia as well as the triggers that reinforce the behavior. Did the patient have an eating disorder prior to diagnosis? Does anyone else in the family have an eating disorder? What symptoms can parents and loved ones look for determine whether or not their child/loved one is intentionally omitting insulin for weight loss? Is the patient purging in any other way besides omitting insulin?

    Those are just a few questions.

    p.s. If you're interested, I found the following while doing a potential lit review on the subject and can send it to you in pdf (it's 156 pages)

    Female Type 1 Diabetics with Eating Disorders: Purging by Insulin Withholding
    by Maureen B. Riley

    A thesis submitted to the faculty of the college of nursing in partial fulfillment of the requirements for the degree of
    Master of Science in Nursing

    Florida Atlantic University
    Boca Raton Florida

    UMI number 1385848
    Last edited: Mar 17, 2008
  3. Ali

    Ali Approved members

    Aug 1, 2006
    if you were/are a teen when diagnosed you automatically know that not enough insulin means weight loss. You lose weight prior to being diagnosed. Almost forty years ago I was diagnosed (as a teen) and I had lost ten or so pounds for no reason before being diagnosed. I had noted my weight loss to family-I was thin already and not trying or not trying to lose weight-just remember thinking it was odd. Everyone just thought it was being a teenager and growing. However, after being diagnosed I remember quickly thinking-Wow if I wanted to lose weight what an easy way! I did not and never have had a weight problem but anyone diagnosed would/will quickly figure it out. I was lucky in that eating was not an issue and my understanding of my health to my BS numbers was clear and real to me so I luckily never neglected my care either by ignoring my care, overeating, or using it to manipulate my weight over the years. I have been lucky in that i was naturally a thin person and one who was able to learn how for the most part to turn of my desire for food. When I was first diagnosed the only way to control the bulk of my care was via the food and I learned early to ignore my desire to either eat or not eat based on my insulin and BS routine/levels. I am not always successful but do manage to limit my splurges or times of not paying attention. Ali
  4. hugforme

    hugforme New Member

    Mar 16, 2008
    thanks so much guys! i appreciate all the help!
  5. diabulimia

    diabulimia New Member

    May 2, 2009
    People w/ diabulimia

    Hi there,
    I just recently created a website about diabulimia.
    and im seeking for others, its a support group, if interested here is the url!


    please visit!
    thank you
  6. DWED

    DWED New Member

    Jun 18, 2010
    Diabetics with Eating Disorders

    My name is Jacqueline Allan and I am the Director of www.DWED.org.uk (Diabetics with Eating Disorders), a not for profit organisation working towards charitable status. Recent studies show that not only are female* type one diabetics at twice the risk of developing anorexia or bulimia, as many as 40% of 15 - 30 year olds regularly manipulate or omit insulin in order to lose weight (commonly dubbed diabulimia). This practice can have devastating consequences such as organ failure, infertility, blindness and in the worst cases, death. Despite this it is not officially diagnosable and there are no current guidelines for the NHS on how to deal with the issue.

    DWED has two main purposes. Firstly we offer support to those affected by deliberate omission and their carers. We try to find suitable services in their areas and this information will be posted on the website so that those who are ready to seek help know where to go to get it. DWED also supports suffers and their carers personally through emails, phonecalls, where possible home visits and through a variety of social networking sites and from tudiabetes to facebook (public and private). There are 500 members across groups. All of the sites are completely pro recovery with no pictures of talk of numbers allowed.

    The second purpose of the organisation is to campaign for better (in some cases any) facilities for Diabetics with eating disorders. DWED is in support of Deliberate Insulin Manipulation/ Omission being recognised as a Mental Disorder. We have a number of members who have been simply deemed as non - compliant and left at that. This is not only unsatisfactory it is potentially lethal. As something that is not officially diagnosable deliberate insulin manipulation/ omission tends to cause a confused reaction among professionals. To be honest when this project began the core aim was to raise awareness within the health service. The overwhelming reaction from all the PCTs contacted is that nearly everyone is aware of it but no one knows what to do about it; there is no "strategy", no guidelines and little UK based research. As such DWED is putting together a Professional Advisory Board composed of Eating Disorder and Diabetes Professionals in the hope that a dialogue will open and a multi-discipline, patient centred approach will be promoted.

    I hope that I have explained adequately what Diabetics with Eating Disorders does and that this is something you are interested in supporting. If you have any questions or comments then please get back to me via the website or through jacq@dwed.org.uk

    *Although less common it can also be found in type 1 males.
    Last edited by a moderator: Jun 18, 2010

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