Maddy Anorexia Nervosa Interview
Australian scientists are calling for volunteers either living with or having recovered from anorexia nervosa, to enrol in the world's largest and most rigorous genetic investigation into the illness.
The Anorexia Nervosa Genetics Initiative (ANGI) aims to identify the genes that play a role in causing the serious and potentially life-threatening illness, affecting an estimated 53,000 Australians.
According to lead Australian study investigator, Head of the Genetic Epidemiology group, QIMR Berghofer Medical Research Institute, Professor Nicholas Martin, PhD, Brisbane, researchers are seeking volunteers to shed light on identifying the genes that predispose people to anorexia nervosa.
'New research reveals people living with anorexia nervosa have four-times more direct relatives with anorexia nervosa than those who have never had the illness. In particular, life-time anorexia nervosa is six times more common in mothers, four times more common in siblings and five times more common in the offspring of people living with the illness.
'Results of this research underscore the critical importance of identifying genes that lead to the pattern that we have seen in families," Prof Martin said.
'For decades studies have shown a strong genetic link to the illness. However, we've been unable to pinpoint particular genes or determine where the genetic link lies, to date," said visiting ANGI lead investigator, Distinguished Professor of Eating Disorders, Department of Psychiatry, School of Medicine, University of North Carolina, USA, Dr Cynthia Bulik.
'As such, we urge any Australian who is living with, or has lived with anorexia nervosa, to join our very important scientific journey of discovery," Dr Bulik said.
'Participating in ANGI is easy and free. Volunteers simply complete a 10-minute online, confidential survey and roll up their sleeves to provide a very small blood sample.
'It costs nothing apart from a little time, but could make a genuine contribution to solving this devastating illness," said Dr Bulik.
Volunteers can be male or female of any age (children require parental consent) who:
Currently have anorexia nervosa; or
Have had anorexia nervosa at some stage in their lives.
To learn more, or to register for the study:
Freecall ANGI on 1800 257 179.
'Given recent advances in molecular sequencing techniques, we are hoping to identify the specific genes that may be responsible for anorexia nervosa and thereby pave the way for new treatments that specifically target the illness," Prof Martin said.
ANGI researchers will analyse DNA samples through a process known as -genome-wide association', comparing the DNA of people who have never had an eating disorder to those who currently have, or have had, anorexia nervosa. Comparative analysis not only serves to identify and discover genes that predispose people to eating disorders, but to also pinpoint genes responsible for depression, anxiety, alcoholism and other common mental health illnesses.
ANGI is being conducted in four centres worldwide including a combined Australia and New Zealand site, Denmark, Sweden and the US. Australia plans to contribute more than a quarter of the total 13,000 DNA samples required for the initiative.
'We are aiming to recruit 2,200 Australian blood donors within the next two years and may even increase this number to 5,000 by 2017 depending on community support for this groundbreaking research initiative," said Prof Martin.
'While identifying the genes associated with anorexia nervosa will not imply people with such genetic background will develop anorexia nervosa during their lifetime, it will help healthcare professionals to identify those who may be vulnerable to the disorder, and to manage their treatment accordingly," Prof Martin said.
Dr Sarah Maguire, Director, Centre for Eating and Dieting Disorders, Sydney, says encouraging people who have, or have had, anorexia nervosa to participate in the initiative will help transform current knowledge of anorexia nervosa causes.
'ANGI will enable us to work towards a greater understanding of, and ultimately a cure for, the illness.
'We know the causes of anorexia nervosa are varied and complex5 and include a combination of environmental, social and cultural factors. However, genetic predisposition is a known cause and should be a key area of focus," said Dr Maguire.
Anorexia nervosa is characterised by an obsessive desire to lose weight through restricting calorie intake and is associated with low body weight, difficulty maintaining a healthy body weight, fear of weight gain and extreme focus on weight and shape.
The illness afflicts people from all age groups, socio-economic and cultural backgrounds.5 While anorexia nervosa typically starts, and is more common among adolescent girls, affecting four-in-every-100, the most serious forms of the illness occur in adults aged 25-to-45 years.
Entrepreneur, lawyer and anorexia nervosa survivor, Kate, 27, Sydney, believes there is a genetic link to anorexia nervosa which predisposes people to the illness and stresses how starting therapy earlier may help prevent the development of the devastating illness.
'If the ANGI study can help identify genes that predispose women and men to this life-threatening illness, I want to give it my all to help researchers work towards finding a cure.
'I nearly lost my life on more than one occasion, and even those close encounters weren't enough to jolt me out of the illness," Kate said.
Kate explains how anorexia nervosa followed her like a 'dark shadow" during her final years of high school, throughout her Law degree, and into her first couple of years in the corporate world.
'There wasn't a single moment where I could escape it. It was insidious, pervading every aspect of my life.
'For me, anorexia nervosa was not just about my appearance, but a deep fear and issue of control and acceptance," said Kate.
'If you could nail anorexia nervosa on the head and start therapy earlier to prevent its development, that would be great.
'I urge every Australian woman and man who has lived with, or is continuing to live with anorexia nervosa, to join the ANGI community and participate in this groundbreaking research to identify genes that play a role in the development of this life-threatening illness," Kate said.
While full recovery of anorexia nervosa is possible, particularly with early treatment and the support of a multidisciplinary healthcare team, ANGI researchers hope their research will lead to a better understanding of the condition, enabling a more successful treatment process.
Blood donations will be used to extract DNA which will be bio-banked for immediate and future genetic analysis under strict confidentiality and within Commonwealth privacy and National Health and Medical Research Council (NHMRC) guidelines.
Blood donation involves attending any local pathology clinic with a kit mailed to participants from QIMR Berghofer containing blood collection and information pack, participant instructions, blood collector instructions, blood collection tubes and a reply-paid, pre-addressed courier bag.
For more information, or to register for ANGI, visit angi.qimr.edu.au.
Interview with Maddy
Working professional, Maddy, 20, Hobart, spends most of her free time hanging out with her friends, exercising and studying.
As a teenager living with the potentially life-threatening anorexia nervosa, Maddy was plagued by insecurities, and allowed peer pressure and perfectionism to get the best of her.
Now fully recovered, Maddy works for a not-for-profit organization specialising in aged-care.
This is her story.
Maddy describes anorexia nervosa as very isolating and controlling.
'Anorexia nervosa is harrowing, to say the least.
'In my experience, anorexia nervosa is debilitating, not only physically, but also mentally and socially," Maddy said.
'It held me back from doing a lot. I missed out on being a teenager due to lack of energy or being in treatment."
Maddy first developed anorexia nervosa at the age of 13. She had just started high school and felt significant peer pressure to look a certain way, which was further compounded by the substantial pressure she placed on herself.
'As a self-confessed perfectionist, I've always wanted to set a good example for my sister and please my mum and dad.
'It was caused by the pressure I put on myself; it was not caused by pressure from my parents," said Maddy.
'As the eldest child, you want to guide and lead your siblings, to help them avoid making the same mistakes that you made. Being the first-born strengthened my resolve for perfection."
Maddy lived with anorexia nervosa for a year. During this period, Maddy's friends found her illness confronting and hard to understand, leaving her quite isolated. She also experienced isolation during her recovery from missing out on various social activities due to her treatment.
'All I wanted was to be normal," Maddy said.
Although Maddy received little support from her friends, her family, particularly her mother and grandmother, were always there for her.
'They were consistently there and supportive throughout my recovery process. Unfortunately, Nan passed away mid-way through my recovery and the resulting grief made the process longer and harder," said Maddy.
After living with anorexia nervosa for a year, Maddy began her recovery process as an in-patient at The Royal Hobart hospital, and continued as an out-patient for years after.
'Going through the public system limited my treatment options," Maddy said.
For Maddy, the recovery process was a long road. While she improved physically after only 18 months, her mental recovery took five years after initially commencing treatment.
'When you're an in-patient, medical professionals ensure you gain physical stability as soon as possible.
'As resources are so stretched, once you reach a physically stable place, they discharge you, regardless of whether your illness is continuing to fester internally.
'Because anorexia nervosa is a mental illness with physical complications, many people mistakenly assume once you are physically 'healthy', everything is back to normal," said Maddy.
'Although I was physically healthy, the battle of the voices in my head continued for years, because it was what I'd known for so long.
'The fear of the unknown and being 'normal' again was a scary prospect," Maddy said.
Maddy also recounts the extreme challenge of 'losing control of the illness" when she was an in-patient, citing 'Everything I had control of was taken from me, including my calorie intake.
'While I'm now recovered, the voices, thoughts and irrational statements still creep up every now and again, and it's really important that I recognise these patterns and stop them before they become habitual. Even stressful situations can spark irrational thinking," said Maddy.
Although having recovered, Maddy continues to fear a relapse.
'For me, anorexia nervosa is a dangerous habit. It wouldn't take much for me to start thinking negative thoughts again, or doing the wrong thing.
'Learning to accept myself for who I am and developing self-worth was extremely hard work. But I knew I had to work on this if I wanted to start living again. I didn't feel worthy of this for some years," Maddy said.
'An eating disorder isn't something you can fight on your own. You need support, assistance and guidance, which, unfortunately, so many of us refuse."
With two distant relatives who have battled anorexia nervosa, Maddy has chosen to participate in the Anorexia Nervosa Genetics Initiative (ANGI) research study to help further international understanding of the illness and its causes.
'It was so frustrating to not have an understanding of the illness when I was diagnosed. There were no studies or statistics and the lack of information and knowledge made it really hard to accept," said Maddy.
Maddy contends both a genetic disposition and the environment contribute to the development of anorexia nervosa.
'If you have the personality traits and genetics and are put in the wrong environment, it can blow up."
Question: What is Anorexia Nervosa?
Maddy: In a nutshell it is a complex and serious mental illness with life threatening physical complications and symptoms! It is an eating disorder whereby the sufferer has poor body image, a fear of gaining weight and as a result has an obsessive desire to lose weight, often done so by restricting one's calorie intake and more often than not accompanied by excessive exercise.
Question: Can you talk about your own experience with Anorexia Nervosa?
Maddy: I was in high school, just turned 13 and was learning that girls can be quite nasty! As a self-confessed perfectionist with an absolute fear of failing I don't necessarily take criticism well and hate letting others down, so when certain circumstances in my life happened and the feelings of desperation and lack of control surfaced I took charge of the one and only thing I thought I could – my calorie intake and exercise regime – unfortunately, I believe I was in the wrong environment at the wrong time accompanied by a genetic predisposition to Anorexia and there began my journey! It was an incredibly tough experience and I was in an extremely dark place. The illness made me a completely different person. My usual bubbly, vivacious, caring nature become someone of anger, hate, detest and sadness…the complete opposite of who I am! Imagine living your everyday life with what I liken to the angel and devil on your shoulder, except it was just the devil that sat on mine, a voice that continually tells you that you are not good enough, to fat, pathetic, weak, not likeable, disgusting, a failure – all of which you believe and that's just a small snippet of an experience with Anorexia Nervosa. I denied there was anything wrong for quite some time and looking back in the midst of it all you don't understand that you are sick, I didn't think I had a problem, I was so fixated on a goal weight and pushing myself to better my best that I couldn't see past the fact that your weight does not and never will determine your worth! It truly was the most harrowing time of my life, I believe it is the darkest place I have ever been (and ever will be!) but funnily enough I am also grateful to it because it taught me a lot of lessons about determination and strength, courage and inner happiness.
Question: How does Anorexia Nervosa affect you, daily, now?
Maddy: While I am delighted to say I am in recovery/recovered – I don't ever believe I will be 100% back to -normal' – I still am so very conscious about the foods I eat and the portion sizes of foods deemed as -treats' but as they say everything in moderation. I can still experience irrational thoughts but it's really important for me to recognise these patterns and stop them before they become habitual.
Question: When did you realise you needed help for your Anorexia Nervosa?
Maddy: For me I didn't come to realise I needed help, I was extremely lucky to have a supportive family who despite me telling them otherwise knew I needed help before it was too late. My Mum took me to a paediatrician who diagnosed me with Anorexia Nervosa and referred me to the only Paediatric Eating Disorder Clinic at the Royal Hobart Hospital in Hobart, I attended this some weeks later and was instantly admitted to hospital. I spent weeks in Hospital before even taking the illness seriously and beginning to understand how sick I was and how I needed all the help I could get if I was to recover! Anorexia Nervosa and any eating disorder for that matter is not something you can fight on your own. You need support assistance and guidance, which, unfortunately, so many of us refuse!
Question: How did Anorexia Nervosa affect your teenage years?
Maddy: I don't like to have regrets but I look back and at times regret my teenage years – while my friends were out socialising, catching up, spending time together at School – I was in a hospital bed, inside, by myself! And when I was well enough to go back to school and start leading a normal life everything I did was dictated by meal times – if a friend wanted to see a movie it had to start and end before or after a meal time, I couldn't go to sleepovers and stay the night, if I went out for dinner I had to be supervised…while I thought I had control ultimately the eating disorder controlled me even when I was in recovery! Anorexia is confronting and hard to understand even as a sufferer so it certainly took its toll on friendships. It was an isolating time and spent plenty of time just wishing to be normal!
Question: Can you talk us through how you overcame Anorexia Nervosa?
Maddy: I spent a good couple of months in hospital; being what they call -refed' I'd damaged my organs and lost so much muscle that the first month to six weeks was essentially being bed ridden while they renourished my body and gave it back the nutrients it needs to survive and function properly, I spent months in physiotherapy rebuilding strength and muscle and then five years as an outpatient at the clinic – this involved regular -weigh-ins' observation taking (blood pressure, heart rate etc) weekly psychology sessions, and at one point family therapy sessions. It was a lengthy process that involved removing fear of food, unrealistic self expectations, dealing with perfectionism, with the ultimate goal of me learning to accept myself for who I am and developing self-worth again. But I knew I had to work on this is if I wanted to start living again.
Question: How long was your recovery period?
Maddy: I spent approximately five years in recovery..the majority of that as an outpatient!
Question: Why did you decide to participate in the ANGI study?
Maddy: I think for me, it was if I could do something somehow to stop and prevent someone else going through such a debilitating and awful illness then I meant that I had given back. I wouldn't wish this upon anyone yet so many people suffer and do so in silence. I've had bronchitis a couple of times and each time I've gone to the doctor they've prescribed me with an antibiotic and within 7 days I'm almost back to my usual health, however with anorexia there is no magic cure or medicine you can take to be well again. Recovery starts with the individual so if this study does prove to show a genetic predispositionthen this enables us to reach out to those predisposed and put programs, systems and knowledge in place to help prevent the development of a full blown eating disorder. Having preventative measures is important and I believe it would be so much nicer to say that these measures have reduced the need for intervention and treatment! The study didn't cost me anything to participate took 15 minutes of my time ...that's nothing compared to the years the eating disorder took off me. I'm proud to have beaten it and want to help find answers! It has the highest mortality rate of any mental illness yet it's not publicly and openly spoken about often enough!
Question: What do you currently do to stay healthy?
Maddy: A balance of things, they key for me is being in a positive environment, being in a positive environment encourages a positive mind frame and this eliminates bad negative and self destructing thoughts!
I drink plenty of water, eat nutritious meals, regular (not excessive!) exercise, have adequate sleep and indulge on myself every now and again, from taking myself out to buy a coffee, to getting a new item of clothing or jewellery, going out with friends, sometimes it's going to the hairdressers.,. the small little things you can incorporate into your daily/weekly routine that make you feel good!
Question: What advice do you have for others battling with Anorexia Nervosa?
Maddy: Know that you are strong enough to withstand any challenge, hurdle and bad day you are facing or may face. Be proud and not ashamed, know you are not alone and find a professional you can trust and connect with. You are not a failure and the journey is not always easy. Help those who love you try to understand what you are going through. As frustrating as their concern and sometimes ignorance can be they just want to see you get better. Being open can help them to help you. Don't lie to yourself, believe in yourself and tell yourself recovery is possible and is the only option. You can do it!
Interview by Brooke Hunter