Are you familiar with diabulimia

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Hi everyone

I live in canada so this might not be apply to you.

I want to know if anyone has encounter young people with type 1 diabetes who also suffer from a unknown eating disorder called diabulimia. I am a type 1 diabetic who suffer from this and also have seen many young girls who have been struggling with this deadly problem. In canada, many diabetic health team and the eating disorder clinics are unaware of this issue and think I'm crazy when i explain it to them. I am trying to educate the whole team with this problem. Does anyone have a good website that i could make pamphlets with to allow families and doctors to become more familiar with this issue? I would also love to know of any canadian clinics familiar in this issue and is able to help.

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I'm a type 1 diabetic and I've volunteered as a counselor and nurse at a camp for kids 8-15 with diabetes. I've encountered this problem on numerous occasions. (I'm also worried when any teenage girl with type 1 diabetes ends up in the ED with DKA.)

A good resource is the Juvenile Diabetes Research Foundation's website. I searched "diabulimia" in their search engine and got two sites chock full of information: T1D Intel: Learning about the dual diagnosis of an eating disorder and type 1 diabetes | JDRF: Improving Lives. Curing Type 1 Diabetes

and

Diabulimia: Skipping Insulin to Lose Weight | JDRF: Improving Lives. Curing Type 1 Diabetes

Hope this helps!

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Specializes in LTC.

Diabulimiahelpline.org wearediabetes.org are both good sites. I'm a recovered diabulimic, and active in the diabulimia community. I also recommend UK sight called DWED. They were integral in having diabulima put into the DSM, so they have a ton of info on care plans, talking to doctors, and for friends and family.

We are becoming more than an unknown disease here of late. They estimate 1 in 3 type 1 woman will or have manipulated their insulin to lose weight. There are even a few books written about what "we" go through. My favorite by far is Slow Suicide by Amy Marcel.

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I first learned about skipping insulin to lose weight about 25 years ago at diabetes summer camp. All the girls in my cabin thought it was a great idea. Sad but true.

This site is good too. Diabulimia Helpline :: Home I'm a huge fan of Ginger Vieira who writes for Diabetes Mine.

I don't know of any clinics that treat diabulemia specifically, but because it is an eating disorder that type of counselor should work. Most eating disorders use the same type of self absorption, deception, disordered thinking, and secrecy. Those are the issues that need to be addressed, then the symptoms of withholding insulin (in the case of diabulemia) or binging and purging (in the case of bulemia) or starving (in the case of anorexia) diminish.

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Funny, I just stumbled across this on DiabetesMine. It mentions an eating disorders clinic that has a special program specifically for patients with diabetes. They may have info. It's at Park Nicollet, neat Minneapolis, MN which also has the International Diabetes Center.

Diabetes and Eating Disorders: Fellow PWD Shares Her Diabulimia Story : DiabetesMine: the all things diabetes blog

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Specializes in LTC.

Haha that's my friend Asha, she helped get me into treatment!!! (The wearediabetes site is her site... She's amazing)

Also Center for Hope of the Sierras in Reno Nv has a darn good program.

I know a diabulimic in Canada who is currently in treatment as well, I can find out where she sought help if you would like.

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Im so happy that there knowledge out there. My area is very unaware of it.

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Specializes in LTC.

Well it's not the favorite topic of endos. My endo berated me 4 years ago, but now understands the issues that surrounds it.

The issues that come into play with diabulima are DIFFERENT than other eating disorders. As T1s we are pushed to achieve perfection every single day. We are overtly aware of all the numbers in our lives. We are in this ready made situation of an eating disorder to develop. It's really very disheartening that the endocrinology field is just starting to recognize us when really, it's been going on for years. I manipulated for 13 years! I never knew it was an eating disorder. I just saw it as the one thing I could achieve perfection in , my weight, my size. I could at least stay skinny. I couldn't be this perfect automaton diabetic, but I could get praise for how thin I was. I am a pretty typical story. I ignored the neuropathy, the stomach pain, the constant brink of the DKA cliff so I could have perfection in just one small area of my life.

It took a lot of therapy to come back. Treatment is hell on earth for most. There is a huge amount of edema, worsening neuropathy, and fear of the unknown that comes with recovery. I watched two girls in one year in my support group die, it's a horrible thing to see that, to know it could be you. That I wasn't any different than them. Those deaths still spur me forward. I am becoming a nurse for them, all I want to do is be the one in the doctors office or hospital that really understands the why. The struggle. I had a great FNP CDE who worked with me in my first recovered year, and I just deeply need to give that back.

My Canadian friend said she is in a standard eating disorders clinic with an endo overseeing her care. She lives in Quebec.

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I am an 18 year old type 1 diabetic and not that long ago (Jr. High) I also had a diagnosed eating disorder. The ONLY thing that helped me was not just counseling (which i did receive) but peer counseling, of course none of the other girls there had diabetes, nor did they know that I had diabetes but it made me feel better because it was then that i saw that diabetes did not make me any different then other girls emotionally or physically. Just medically. Hope this helps :)

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Another great site/organization is DieOrBeatThis. The founder, Emilee, is Canadian and she has helped me a lot through her constant support and communication! She has a recovery video here: Overcoming Diabulimia! (JDRF Video Contest Winner) - YouTube It's so inspiring to me because I am a dancer too!! Check out the site, Diabulimia, Type 1 Diabetes, and Eating Disorders | DieOrBeatThis there's lot's of useful information on diabulimia (what it is, risk factors, complications, etc) and recovery resources. I'm not sure if you're still looking for someone to work with, but send her a message, I'm sure she'd love to hear from you! Best of luck :)

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