#ed-dmt1

[diabulimiahelpline-blog]

Know that no matter the time, no matter what has happened, we are here to listen and help you.

[diabulimiahelpline-blog]

What Is Diabulimia

What is diabulimia?

Diabulimia is the media nomenclature coined to describe diabetics who purposely withhold insulin in order to lose weight. It’s a new level of eating disorder that wraps up all the dangerous health consequences of diabetes, bulimia, and anorexia. Also known as “dual diagnosis” a term developed by the medical community to describe a patient who suffers from both diabetes and an eating disorder. Dual diagnosis is not specific to insulin restriction however and can apply to a diabetic who suffers from bulimia, anorexia, or EDNOS. Diabulimics are not non-compliant patients. They are suffering from a very real and very deadly eating disorder.

What am I risking when I skip my insulin?

The short term consequences start with Severe Dehydration, muscle loss, Diabetic Ketoacidosis and quickly escalate to high cholesterol, Bacterial Skin Infections, Yeast Infections, Menstrual Disruption and staph infections. Long term, the consequences become Retinopathy, Neuropathy, Gastroparesis, Nephropathy, Peripheral Arterial Disease, Atherosclerosis, a fattening of the arterial walls, Steatohepatitis, a type of liver disease, Stroke, and even death. For every weekend you go without insulin, you're saying goodbye to a functioning nerve in your foot! And for every week you're in the throws of diabulimia you're upping your chance to end up with retinopathy, dialysis, and sterility. And for every month, your chance of kidney disease rises exponentially. That is, if you don't fall into a ketoacidosis coma first. This WILL kill you, but only after putting you through some of the most excruciating years of your life. TAKE BACK CONTROL OF YOUR BODY, while you still have the choice to do so!!

What are the signs of diabulimia?

Like any eating disorder the signs of diabulimia vary from person to person but some key factors to watch for are;

A1c of 9.0 or higher on a continuous basis.

Unexplained weight loss.

Persistent thirst/frequent urination.

Preoccupation with body image.

Blood sugar records that do not match HbA1c results. 

Depression, mood swings and/or fatigue.

Secrecy about blood sugars, shots and or eating.

Repeated bladder and yeast infections.

Low sodium/potassium. 

Increased appetite especially in sugary foods.

Cancelled doctors' appointments.

What does the term ED-DMT1 mean?

In September 2008 new nomenclature was recommended at an international focus group held in Minneapolis composed of individuals with interest and expertise in Eating Disorders among individuals with Type 1 Diabetes. The group recommended that the term ED-DMT1 be used to designate Eating Disorder - Diabetes Mellitus Type 1. It is representative of the vast range of Eating Disorders that affect Type 1 Diabetics.

What can I do if I think my child or loved one is suffering from diabulimia?

The first step is approaching your loved one in an un-accusatory and caring fashion. Don’t bombard him or her with questions or accusations. It is likely that they don’t even know what they’re doing themselves. Many diabulimics suffer for years from a disease without a name. Sit down and present them with the signs and symptoms of diabulimia, why you’re concerned about them, and some steps the two of you can take together to try and reach recovery. Although they are few and far between, there are some doctors who have expertise dealing with diabulimia, and at last count there were two eating disorder treatment centers that specialize in diabulimia. See the tab on the left for a complete list of Resources. Most importantly, remember, parents do not cause eating disorders and patients do not choose to have them!

Why hasn't my doctor told me about diabulimia?

Most endocrinologists still don’t know about or recognize diabulimia, it has only very recently gained notoriety in both the public eye and the medical community. Because diabulimia often presents with the same symptoms of an out of control or non compliant diabetic it usually goes undiagnosed. If you suspect you or a loved one might be suffering from diabulimia DO NOT hesitate to push the issue with your doctor. Remember: You are your own advocate! Fight for your health!

When is my child most at risk of developing an eating disorder?

According to the National Institute of Mental Health, the average age of eating disorders onset in the U.S. is 19. A 2006 poll of U.S. college campuses conducted by the National Eating Disorders Association found that one in five college students believe that at some point they have suffered from an eating disorder.

[lupta-spark]

Went to see Dr. Gannon today and then saw this.

We are fighting for the mother that smells constant ketones on her son or daughter, watches them getting weaker as they omit their insulin, but who does not know where to turn.

We are fighting for the recently diagnosed young person who is bombarded with information about carb counting, nutrition, what to eat, when to eat, but given no insight into the emotional toll.

We are fighting for the teenage girl with diabetes who is congratulated by her endocrinologist for losing weight, when she knows it’s because she has been sick and been running her blood sugars high.

We are fighting for the 30-year-old that presents at clinic with a high HBA1C but perfect meter readings, who feigns the ‘I don’t know how that happened’ and is sent on their way with an appointment in six months and encouragement to test more often.

We are fighting for the individuals suffering from ED-DMT1 who are simply told ‘you need to take your insulin’, who are scolded in A&E departments and treated like naughty children in medical wards.

http://www.justgiving.com/diabeteswed

If only this was enough. In some ways it’s become even more clear just how much more we could offer if we had the right funding and resources in place. It’s frustrating to feel restricted by the amount of money (or lack of) that we have in the pot. We’ve got big ideas and while they are feeling closer to hand right now, we haven’t made it there just yet. Any mention of possible disordered eating throughout any of the coverage for NDEW was slim. In fact, the only news I saw relating to the week in any way was a small segment on This Morning and a display concerning Retinopathy at my local hospital, which largely pertained to Type 2 diabetes. DiabetesUK and JDRF launched a Type 1 Diabetes awareness video on Thursday, however any publicity of it seemed lacking. I only found out that the video existed by checking the DiabetesUK website as I regularly do.

DWED feels like a family to me. I became a volunteer by way of the lovely Clare Allison’s original website, and individual contact with her via various other online areas. Over the years I have been astounded to come into contact with such wonderful, courageous women through the DWED circle. All of them have different experiences and background stories, but possess the same determined aim –to gain recognition and validity for this disorder which ridiculously still had no official name.

Just like anyone who classes themselves as recovered from any kind of eating disorder, it can be challenging to work in relation to that subject even when you are well. However, evident from what I’ve witnessed, with Diabulimia/ED-DMT1 it can be even harder to walk away. This is because there is still so much to do, and so much that needs to change with regards to approach, management and resources. Anorexia and bulimia are already universally known about, and treatment can be problematic but is certainly widespread and accessible. ED-DMT1 still brings the question of ‘what’s that?’ when put to any so-called eating disorder ‘expert.’

Basically all of us are extremely passionate about what we do. We are passionate about working for DWED and for the exciting advances that we hope are ahead. But as a car cannot run without petrol, and a body without sufficient insulin, we sadly cannot run on passion alone. Asking for money is difficult. We are British (or Scottish, or Irish?! Don’t want to get into trouble here! But you get my point), it does not come easy to us, but lately DWED has had to get over the stiff upper lip and ask: Please, please support us by donating even just £3 a month via JustGiving, or whatever you can spare on a regular or one off basis. All of us realise that these are hard times, I am always scraping by the end of the month myself, but with my donation taken as money goes into my bank account I don’t miss it. This is no guilt trip, we aren’t ever going to present like the tear-jerking advertising you might see on TV and magazine pamphlets, we are just honest. Moreover you can be safe in the knowledge that every penny we receive will go towards worthwhile endeavours. Help us continue to advocate for acknowledgement of this horrendous disease.

We are fighting for the mother that smells constant ketones on her son or daughter, watches them getting weaker as they omit their insulin, but who does not know where to turn.

We are fighting for the recently diagnosed young person who is bombarded with information about carb counting, nutrition, what to eat, when to eat, but given no insight into the emotional toll.

We are fighting for the teenage girl with diabetes who is congratulated by her endocrinologist for losing weight, when she knows it’s because she has been sick and been running her blood sugars high.

We are fighting for the 30-year-old that presents at clinic with a high HBA1C but perfect meter readings, who feigns the ‘I don’t know how that happened’ and is sent on their way with an appointment in six months and encouragement to test more often.

We are fighting for the individuals suffering from ED-DMT1 who are simply told ‘you need to take your insulin’, who are scolded in A&E departments and treated like naughty children in medical wards.

We are fighting for the Unseen.

All of this needs to stop.

http://www.justgiving.com/diabeteswed