June 10, 2010

Nourishing a Good Cause

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As many of you are well aware, there are a few issues that are near and dear to my heart, and of those, eating disorder awareness hovers close to the top of my list, especially as this serious condition relates to people with diabetes. I know it’s not a global area of concern to the diabetes community, no more than it’s a global area of concern in the eating disorder treatment and advocacy community, but I think we should all be concerned that an estimated third of girls and women with type 1 diabetes have manipulated their insulin, a practice that has been shown to lead to increased risks of developing retinopathy and neuropathy.

There was a tsunami of media attention when insulin omission or diabulimia became the health topic du jour a few years ago, but the tidal wave has gradually become but a trickle, and now it’s little more than yesterday’s news. If it doesn’t affect you on a personal level in some way or another, it might not feel like there’s any more to say, write, or read about it, but it’s a serious problem that deserves ongoing attention because, media attention or not, it persists among diabetes patients. While the TV cameras and journalists have moved on to other subject matter, people with diabetes continue to manipulate their insulin to control their weight, and exhibit unhealthy behaviors related to food, body-image and diabetes self-management, behaviors that range from mildly concerning to downright pathological and potentially lethal.

Just as many of us would go out of our way to help another diabetic (or caregiver) who might be in need of supplies, advice on diabetes gizmos and gadgets, or any of the countless ways that we help and are helped by the DOC, once someone becomes entrenched in the behaviors and belief system that both characterize and fuel diabulimia, we all have a role we can play in their recovery.

We can offer kind words and support if they reach out in one of the many diabetes communities to which most of us belong. We can share our own experiences with trying to find balance with a disease that by nature, seems to sabotage the most earnest of efforts to live harmoniously and intuitively with food, and can leave you with the sense that your body has a mind of its own. We can offer links to helpful websites or treatment resources. We can also support research that will eventually lead to treatment and prevention because too many of our own are suffering, and too many treatment providers have just dismissed them as non-compliant or brittle, a term that makes me roll my eyes every time, because they don’t recognize the problem for what it is or don’t know how to treat it.

While there is not a ton of research being done in this special area, Dr. Ann Goebel-Fabbri, a psychologist with Joslin Diabetes Center in Boston and professor of psychiatry at Harvard University, has been studying insulin omission amongst type 1 diabetics for years now. While there is room for improving the level of awareness, without her work, the awareness about eating disorders and diabetes wouldn’t be what it is today.

There is so much more to understand though, so towards that goal, Dr. Goebel-Fabbri will be running in this year’s Litchfield Hills Road Race, on June 13th in Litchfield, CT to raise funds for Joslin’s Women’s Behavioral Health Fund. So far, the Women’s Behavioral Fund enabled her to travel to the ADA conference in New Orleans last summer to present on the topic of diabetes and eating disorders, a problem that continues to befuddle most medical teams who almost inevitably encounter patients practicing insulin omission. The fund went towards the purchase of academic books on eating disorders to train a Joslin dietician on treatment of eating disorders. That dietitian now has a portion of her time dedicated to the Joslin eating disorders team. The funds have provided for the allotment of time for providers to discuss difficult situations and receive treatment suggestions from the eating disorders team. Additionally, it’s allowed Dr. Goebel-Fabbri to analyze more data on her 11 year follow-up study to create a manuscript that will be submitted for publication soon. This manuscript looks at women who recover from insulin restriction and women in whom the problem emerged in that 11 year period – a naturalistic follow-up to track new onset and recovery.

Dr. Goebel-Fabbri also shared some of the projects she is hoping to pursue in the future as the funding becomes available. She would like to do qualitative research on both women and men with type 1 who have recovered from insulin restriction and an eating disorder. Garnering an understanding of the factors that led to recovery would provide insight into how to tailor treatment for others battling this problem. She would also like to report on the effectiveness of new treatment strategies being used by patients to recover from eating disorders. Longer term, Dr. Goebel-Fabbri is hoping to compile the research into a book that includes real stories of recovery, a resource that is sorely needed by doctors and diabetes clinicians for whom there are few resources to help them understand and treat this serious condition.

The run is this Sunday, but please note, she will be fundraising through the summer to help build the Women’s Behavioral Health fund. Please consider contributing whatever you’re able to give. Her work will help so many individuals with diabetes struggling to overcome food and body issues, and when those people find their respective paths to recovery, the entire DOC and global diabetes community will be that much stronger and our voice will be that much louder.

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12 Responses to “Nourishing a Good Cause”

  1. Rachel says:

    This is an excellent cause, thank you so much for sharing.

  2. Cara says:

    This is an important issue! I’ve minipulated my insulin before (though not specifically to loose weight) and the dangers are so serious. I’m glad that you advocate for it and that you let us know about others who do the same. Thanks LeeAnn.

  3. Rachel Whitehouse says:

    Thank you for raising awareness of this important issue. I had the pleasure of working with
    Dr. Ann Goebel-Fabbri and she is passionate about this topic, and compassionate about her patients.
    Supporting her work at the Joslin will really make a difference for those already dealing with this
    disorder, and hopefully help find ways to prevent it in others.

  4. WOW, Thank you all for your very supportive and lovely comments. I certainly do feel passionate about this very important issue, and I feel even more passionate for helping my patients and learning how to help them in better, more innovative, and more effective ways. Lee Ann, I can’t thank you enough for your help and support in posting this to your blog. I feel that we have become friends through our email and phone chats, and I hope to meet you in person someday soon!
    Thanks again,
    Ann Goebel-Fabbri

  5. Mom says:

    Might this be an area for PhD research if you pursue one?

  6. Carol says:

    Thank-you to everyones hard work and efforts keeping the message about this issue on the front burner. As a type 1 diabetic, I’m implored by the vast majority of the medical field overlooking the magnitude of this problem; rather than addressing the root issues causing the patient to engage in this behavior, they simply write the patient off as being non-compliant (which they are to a degree) or as being a brittle diabetic. Again, thank-you for delving into the real issues…This will not go away, but as we know, the lives of young girls and women will as long as this issue is ignored!

  7. Brenda W says:

    I remember a girl at work telling me I was “lucky” because I could loose weight by eating if I didn’t take insulin. It is an important issue, and while I’ve never done it there have been many times (especially after dx at 19) when it was very tempting. Thanks for bringing this issue back to everyone’s attention.

  8. Wow! How very cool for Dr. Goebel-Fabbri to comment! :-)

  9. A1c Yes! says:

    [...] years develop food and body issues. I just don’t want to go there. (Read more about diabulimia). So for now, she gets insulin for the amount she actually wants to eat and she’s allowed to [...]

  10. [...] See more Diabetes Art Day projects on The Butter Compartment. [...]

  11. Cindy says:

    This is such an important issue and more research is definitely needed on it! Thanks for helping spread awareness!

  12. [...] years develop food and body issues. I just don’t want to go there. (Read more about diabulimia). So for now, she gets insulin for the amount she actually wants to eat and she’s allowed to [...]

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