ABOUT US AND FREQUENTLY ASKED QUESTIONS
This page will covers the ins and outs of Diabulimia and ED-DMT1, as well as answer queries we are asked about on a regular basis.
First of all, what is type 1 diabetes exactly?
It is an autoimmune response whereby someone’s beta cells start attacking their immune system which leads the pancreas to stop producing insulin. It is most typically diagnosed in adolescence but more and more adults and children under 5-years are being diagnosed. Type 1 diabetics must inject insulin or administer it via pump to stay alive. This involves using background insulin as well as using boluses to cover food intake. Diabetes UK claim that Type 1’s make up roughly 10% of the population with diabetes, which is around 350,000 in comparison to 3.5 Million cases of type 2 diabetes.
What is DWED? Who are we and what do we do?
DWED stands for Diabetics With Eating Disorders, which you must know at least something about having landed on this webpage! DWED is the only current charity in the United Kingdom that supports and advocates for people that struggle with both type 1 diabetes and any kind of eating disorder. DWED was founded as a small non-profit organisation in 2009 by Jacqueline Allan, followed shortly by Sian Howarth. It became an official charity in 2010.
Currently, Jacqueline remains the charity director - she is a PHD candidate with extensive knowledge and insight into diabetes and eating disorders, both personally and professionally.
Jacq spends a lot of time liaising with health care professionals and offering her expertise on T1ED where it is sought. This extends to the training sessions she runs with both diabetes and eating disorder specialist units, to try and educate them on how to treat patients that have both conditions.
Claire Kearns is DWED’s content writer and social media manager. She is the face behind the majority of blogs that are published and is in charge of our Twitter and Facebook accounts.
Our UK-specific facebook groups are currently facilitated by Jacq and Claire as well as Sandie Atkinson, Fiona Kennon and Aoife Twohig-Donfield , all of which have had past experience of T1ED. We have both a group for people currently struggling with T1ED or may have history of such, and also one for family, friends and carers of loved ones with the condition.
The DWED trustee board consists of: Dr Miranda Rosenathal, Professor Janet Treasure, Diabetic Specialist Nurse Nicola Allen, Vikki Meadows, John Allan, Dr Stephen Thomas,and Aoife Twohig-Donfield
Our website offers links to other useful organisations as well as a news and blog section. We also provide regular content via our Facebook and Twitter pages, and have our own Youtube account.
Media content is something that DWED is very cautious about and we try to avoid being quoted or referenced in any sensationalist or misleading reporting. However, we have been featured on many mainstream news channels and newspapers, as well as in radio interviews and parliamentary debates. Please do see our press and media section to access some of this content.
What are ED-DMT1, Diabulimia and T1ED?
So let’s get down to the finer details. Confusion concerning what ED-DMT1 is and how it relates to Diabulimia is common. The media often get it wrong and conflate the two and this is mainly down to ‘Diabulimia’ being thrown around casually and sometimes used in the wrong context.
‘Diabulimia’ is an eating disorder that is present in someone with type 1 diabetes. It involves the omission of insulin doses which lead to high blood glucose levels and the body’s cells being deprived of oxygen and energy. This can quite quickly lead to a state of diabetic ketoacidosis (as explained further down this page) which puts you at high risk of death but also can cause dramatic weight loss if left untreated. Individuals may have ‘Diabulimia’ without any other more typical eating disordered behaviours, but insulin omission can also be one aspect involved in a wider diagnosis of ‘ED-DMT1’ which stands for ‘Eating Disorder-Diabetes Mellitus Type 1.’
ED-DMT1 is a bit of a mouthful to say and so it’s rarely used. Press articles often just state that diabetes and an eating disorder equals ‘Diabulimia’ but this can be incorrect. Diabulimia stands soley for the potentially lethal act of omitting insulin, but it is ‘ED-DMT1’ that encompasses type 1 diabetes and any kind of eating disordered behaviours. This may be purging by vomiting or restricting food, which may be present alongside periods of insulin manipulation (Diabulimia). Such oversight often leads to people with ED-DMT1 being incorrectly diagnosed as anorexic or bulimic and treated in a text- book way for those disorders which can be ineffective as well as extremely harmful.
As a potential alternative to ‘ED-DMT1’ which just does not seem to be easy to remember, the indicator of ‘T1ED’ (Type-1-Eating-Disordered) or ‘Tied’ (idea of Type 1 Diabetes and an Eating Disorder being tied together) has been suggested as a more impressionable and memorable alternative which DWED are supporting. We aim to use this term in more of our articles moving forward while also still giving insulin omission the recognition it deserves as one potential aspect of ‘T1ED or as a standalone illness where applicable.
So why is this combination of conditions so dangerous?
There are many potentially lethal; risks of not administering your prescribed insulin as you need to be when you have type 1 diabetes and here I am to focus on the short term medical dangers
Hyperglycemia is elevated blood sugar indicative of above what is deemed a normal level of between 4-7 and is caused by a lack of insulin. This lack of insulin prevents the body from converting glucose to glycogen. It is the blocking of this process that results in weight loss. Persistent Hyperglycemia leads to Diabetic Ketoacidosis (DKA). Many Type 1’s s are in DKA at the time of diagnosis and have experienced the accompanying weight loss. Over a longer term hyperglycemia is responsible for most diabetic complications (blindness/ amputation etc)
Diabetic ketoacidosis (DKA) happens when there's not enough insulin to allow glucose to enter the cells where it can be used as energy. The body begins to use stores of fat as an alternative source of energy, and this in turn produces an acidic by-product known as ketones. DKA usually develops over a 24 hour period but this can be much less in patients on an insulin pum It leads to dramatic weight loss and is fatal if left untreated – 100% mortality rate. Various research has shown that with adequate & timely treatment that falls to 2-5%
Hypoglycemia (low blood sugar) occurs when there is too much insulin in the blood and therefore not enough glucose in the brain leading to short term cognitive impairments and a biological response similar to ‘fight or flight’ If this isn’t treated with glucose in an immediate manner hypoglycemia can result in coma and deat Hypoglycemia can be a frequent struggle for people with type 1 diabetes and an eating disorder if their eating habits cause large spikes to their blood sugar levels or they suffer from large crashes from high to low levels whereby insulin doses are very hard to regulate. It is often a matter of playing guessing games, or Russian roulette.
While the mortality rate for AN is 7 per 1000 and for type 1 Diabetes is 2.2, combine the conditions and that mortality rate jumps to a truly depressing 34.6 per 1000.[1]
What is the issue with ‘Diabulimia’ being unofficially diagnoseable?
Part of DWED’s work involves pushing for offical recognition of ‘Diabulimia’ and T1ED or some other kind of official terminology to denote insulin omission and eating disorders in people with type-1-diabetes. This would mean it would be listed within the most up to date versions of both the Diagnostic Statistical Manual (DSM) and International Classification of Diseases (ICD), which are used for the medical classification of mental health disorders.
The reason we strongly push this agenda is that without an official diagnosis people with diabetes and eating disorders are not being offered the treatment they need within a timely manner and are routinely being dismissed or misdiagnosed with standard eating disorders.
Furthermore, this lack of official label means that there have been a paltry amount of clinical studies based on T1ED and Diabulimia. The lack of which means that and statistics and information we have available on the condition are limited or unreliable.
How common is ED-DMT1/T1ED and Diabulimia?
Even in light of the above, the figures we do have on prevalence are quite alarming. The following are some of the most up to date statistics that have been published:
Women with type 1 diabetes have a roughly 40% greater excess risk of all-cause mortality, and twice the excess risk of fatal and nonfatal vascular events, compared with men with type 1 diabetes.
Of the 26000 ‘avoidable’ from diabetes in 2012 the highest risk of death from any type at any time is among young T1 women aged 15 – 30. Women with Type 1 have a 9 times higher chance of death than their non diabetic peers.[2]
Up to 40% of females who have Type 1 Diabetes admit to missing insulin for weight loss purposes.[3]
60% of females with Type 1 will have experienced a clinically diagnoseable Eating Disorder by the age of 25.[4]
New research suggests that 11% of adolescent males also engage in insulin omission for weight control purposes.[5]
Why are eating disorders so common in people with type 1 diabetes? Why are they so susceptible to developing problems around food?
Although every individual is different, there are several common aspects that may contribute to development of an eating disorder in someone with a diagnosis of type 1 diabetes. These influences have been found in evidence put forth from the limited data available as well as the accounts of real life sufferers.
The close fixation on numbers and nutritional contents of food involved in treating type 1 Diabetes is undoubtedly relevant. Another factor that typically may be a trigger, especially if diagnosis happens during adolescence or early teenage years is the weight loss that often happens at that point, followed by some weight gain as insulin regime is introduced, both of which bring may trigger self consciousness and a fixation on body image.
Furthermore, people with diabetes often talk about feeling alienated from their peers, experiencing stigma and even bullying, particularly in school or work place environments. Type 1 diabetes is also very much linked to other mental illnesses, most typically anxiety and depression, which in turn often come hand in hand with eating disorders.
What are the most common signs of diabulimia?
The warning signs relating specifically to insulin omission/Diabulimia are very much like the symptoms that are prevalent before a type 1 diabetic is diagnosed and prescribed the insulin that they so desperately need. These signs include excessive thirst, frequent urination, exhaustion and weight loss. Additionally someone with an eating disorder and type 1 diabetes may display a degree of psychogical behaviours, for example, a fixation with weight and shape or discontentment with their appearance. Secrecy is often a factor, and can be particularly relevant in someone with type 1 diabetes if they suddenly become less willing to share their glucose readings or insulin dosages taken.
What is the issue with treatment resources for people with type 1 diabetes and eating disorders?
Adequate treatment resources for ED-DMT1 and Diabulimia are woefully lacking. For many years the issue has been systematically ignored. This has resulted in needless suffering and sadly many deaths that could have been prevented if the right resources had been in place to provide support to those people. In order to address the issue head on we need both outpatient and inpatient units that are fully trained up and reliable with regards to caring for people with diabetes and eating disorders.
DWED offers specific guidance in relation to what should be expected in the way of good patient care within eating disorder unit settings via our members section.
Has there been any recent progress in this area?
Fortunately over the recent past year or so, the tide does seem to be turning. This has been sustained by the publicity that resulted from the documentary airing. Prior to this however, we have seen some crucial changes, most importantly the new NICE guidelines for children and young people. These recommendations now state that cases of such with type 1-diabetes and eating disorders need to be treated as a priority and urgently referred on to specialist services that can more closely monitor their safety.
There has also been an amendment to the latest DSM (5) whereby Insulin omission was inserted into the Bulimia Nervosa diagnosis criteria as a means of purging alongside vomiting, over-exercising and laxative abuse. This is of course progress but still not quite what we need. T1ED is an eating disorder in its own right and insulin omission is much more than just a behavioural aspect of bulimia.
The most exciting news we have most recently been given is that the NHS is finally agreeing that they will try to outline and implement some kind of strategic process for which can be used at clinical level for diagnosing and treating people with type 1 diabetes and eating disorders. This cannot come about soon enough.
What training options does DWED provide and how can I arrange this for a specific hospital service?
Jacqueline Allan runs DWED training sessions to provide information on understanding and providing care for people with diabetes and eating disorders to health professional teams and other interested parties. All details of which can be found via our website.
Do you provide any guidance or support for people with type 2 or any other kinds of diabetes and eating disorders?
DWED is a charity that specifically caters to people with type 1 diabetes and eating disorders. This does not however mean that we do not appreciate and acknowledge the fact that people with other types of diabetes can also struggle with eating disorders and if on an insulin regime may engage in insulin omission.
The reason we do not offer services to those with type 2 diabetes or present information pertaining to those with type 2 or any other type of diabetes besides type 1, is not because we want to exclude or deny support, but because we do not feel we have the expertise or knowledge to give such advice. We therefore ask anyone who feel they are in such a position to seek support and guidance from their local services such as GP and diabetes clinic. Organisations such as diabetes.co.uk and diabetes.org.uk also may be of help.
Is there anything I can do as a volunteer for DWED? I feel I want to give something back.
Certainly! First of all, as a small charity DWED desperately needs additional funding to continue existing and we are currently just about sustaining ourselves. We therefore ask that you consider signing up for our membership package at the cost of just £3 a month which provides you with access to specialist material relating to T1ED and Diabulimia. Please take a look at our membership options and details on how to sign up here.
DWED always needs volunteers able to dedicate time to help us with various tasks and projects. This could involve raising awareness and navigating with the press, organising our correspondence, adding design and content to the website or even taking up a support role in one of our facebook groups.
Willing volunteers that have had an eating disorder themselves must have been in a period of recovery for at least 2 years to become a permanent member of staff. By recovery we mean having abstained from the use of any eating disordered behaviours. You should also ideally be able to help out for 4 hours a week and upwards, unless in the case of unforeseen circumstances. If this applies to you then join our volunteer facebook group or email info@dwed.org.uk.
If the above means you are not applicable to take on an official role within DWED then you can still certainly contribute to the cause! This is because additionally, we also are regularly seeking out case study subjects to be involved in our members content material and are always so grateful for anyone willing to spare us some time to talk. Please sign up to our contact address book here.
As a charity do DWED have any specific future aims?
We are always looking to strengthen our volunteer network as well as create further awareness and also increase membership subscriptions.
We have recently created our own Facebook group which is unique to the United Kingdom and can provide peer to peer support, as well as a separate group for loved ones of people with T1ED. We are in process of producing a professional network for health-care providers to interact in a private space. We are also compiling a list of diabetes and eating disorder care providers specific to each area of the country, which can be offered as resources for people with ED-DMT1/T1ED and/or Diabulimia.
Our ultimate aim is to have be T1ED recognised as a specific Mental Health Diagnosis with appropriate guidelines, research and specialists
Is there anything else we’ve missed out that you want to know? Just get in touch and ask!
Further Reading Material
Diabetes and Eating Disorders: It's About Time People Started Listening[7]
Stressing the difference between type 1 and type 2 diabetes: why do we care?[7]
[1] Nielsen, Emborg and Mølbak, (2002).
[2] R Huxley. S.A.E Peters, G.D Mishra, M Woodward. Risk of all-cause mortality and vascular events in women versus men with type 1 diabetes: a systematic review and meta-analysis (The Lancet: 2015), p7-14.
[3] Fairburn and Peveler (1991)
[4] Colton et al. (2015)
[5] Hevelke L.K. et. Al. (2017)
[6] P.D. Macdonald, C. Kan, Marietta Stadler, G.L. De Bernier, A. Hadjimichilas, A-S. Le Coguic, Jacqueline Allan, Khalida Ismail and Janet Treasure (Diabetes Medicine: 2017).
[7] Claire Kearns (Huffington Post UK: 2017).
[8] (BBCThree: 2017).
[9] Claire Kearns (Beat UK: 2018).