Patient Council Spotlight: Focus on Fryd Thrue of Denmark

My name is Fryd Thrue and I live in Hillerød in Denmark – a city 30 minutes’ drive north of the Danish capital Copenhagen. I live together with my partner and our three kids – a girl (12) and two boys (9 & 3). I work in a company that develops, manufactures and sells life saving and diagnostic equipment.

I have a background within finance, accounting and tax. My position today is to head a team with the responsibility of Business Intelligence, master data and business analysis. My work has always played a big role in my life, and I have spent many hours working.

My country

I live in Denmark. The country with the happiest people in the world. The country where the author H.C. Andersen was born, and where the statue of the little mermaid inspired by H.C. Andersen’s tale is placed.

In Denmark we have LEGO, most kids in the world know the toys. We have Tivoli and Bakken – the world’s two oldest amusement parks.

Danish design is well known in the world.

My favorite things

As I a mom with three kids, I prioritize to spend as much time as possible with my family. As a part of my life trying to stay fit and slim, I do a lot of exercise. I do fitness and I love to run. I also love to spend time with my friends. If I have time, I enjoy movies, the theatre and reading books.

My days are fully booked with work, exercise, family and friends – so I find myself looking for the small moments just having some time on my own!

My life with obesity

I remember my parents always told me, that I loved food from the day, I was born. As a child I was not overweight, but “big boned” and not as tiny as all the other girls. Being a teenager where beauty and size were everything, I was constantly dieting. Once I tried taking dieting pills and stopped eating – I was slim, but not happy. So as far as I remember back in time, food and dieting have been huge factors in my life.

I think, I have tried all weight loss programs available – Weight watchers, Weight consultants, Dukan, Nupo, dieting pills – you name it! Nothing really worked on the long run. I got back to my old habits with too much food.

When I as 27 years old got pregnant with my first child, I gained 25 kilos. Just after a few weeks after giving birth, I was back on the same weight as before the pregnancy. The second time it was a gain of 25 kilos again and it took a bit longer and a lot of running to come back. When I was 36, I got pregnant with my third child and again I gained 25 kilos. I lost nothing after the pregnancy. I changed position in the company where I was working, and it was quite a stress full period for me with a little baby and a new position. I started gaining weight on top of my pregnancy weight.

I did not have the motivation or energy to start up losing the weight for some years. I reached a time, where I started to avoid social events and my self-esteem was really low. I decided to myself that I could not continue to live like this and be unhappy.

I chose to start up a one year transformation program with a trainer and dietician with focus on exercise and the right food. When I signed up for the program, there was a long waiting list and I had to wait for several months for the start up, and I think that was actually a good thing for me, as I was top motivated to start up, when I finally started the program. I was focused and had promised myself to go all in. I lost almost 40% of my body weight and went from a BMI of 37 to less than 24 – It was a great feeling not to be obese or overweight anymore.

I am struggling every day to keep my weight. I exercise almost every day (5-6 times a week), both because I like it and the feeling I get from the exercise, and because I am anxious to gain weight again.

Now I have to find the balance to keep my weight but also to get a natural relationship with both food and my exercise – and I am not there yet.

EASO Patient Council

I hope to see that EASO Patient Council will be able to do a difference in terms of giving the right focus to the health care and the food industry, pointing out the responsibility of obesity – not only to the individuals, but also a responsibility in society, health care sector and food industry.

When we see the numbers of the level of obesity in Denmark, it is increasing – the growth is mainly in the younger population. We have a lot of focus on exercise and health in general in the public, but why do the numbers not move to the better. Why are our kids met with unhealthy food all over – in school, in sports clubs, in super markets etc.

My role

I am trying to be open and tell my story to everyone, who wants to listen. I can see both colleges and friends being inspired by my weight loss story. I can see myself trying to inspire others on their way to lose weight and to show them that it is possible – also without surgery.

I am a member of the Danish Adipositas organisation. This is a volunteer non-profit organisation that works for the right to a good life and good conditions for the obese population in Denmark. The organization also offers a range of activities to the members and health care professionals.

I am new into this field, so I need to find my role and where my story and energy makes the most value to the organisation and to society!

Patient Council Spotlight: Sven Schubert

Hello Sven, please introduce yourself to EASO

Sven SchubertHi, my name is Sven Schubert. I am a 37 year old German software engineer and I have lived with obesity all of my life.

I moved to Ireland from Germany in my early 20s, and have been living in and around Dublin ever since.

A big computer nerd, I love science fiction and history. I speak German, English, some French, Czech, tiny bits of Dutch, Norwegian, Polish and Russian and am currently trying to learn Irish and Mandarin. I thoroughly enjoy a good book at home as much as an adventurous road trip. Did I mention that I love and ride motorcycles?

Sven, please describe to our readers what your experience of obesity has been like

I have been morbidly obese from age 2 on-wards and with brief excursions into the “just overweight” designation during my growth-spurt years, and a self-imposed 40% weight-loss in 1 year as I stepped over the threshold to my 20s.

My weight yo-yo-ed and I reached a BMI of 85 in 2011, when I was admitted to hospital, put on a milk diet and in 2012 underwent gastric bypass surgery. I’ve lost 40% of my body weight since then, have hovered around a steady weight for 2-3 years and am currently battling complications from plastic surgery /skin reduction surgery earlier this year, which ironically sees my weight picking up again.

What are your hopes for the EASO Patient Council at the 2017 European Obesity Summit? 

The challenges we’re faced with are for the most part not unique to a particular country or region. I hope we will find a common voice in communicating with the medical profession and can communicate effectively with relevant industry, including food and fitness, in furthering our endeavors. We want to create a respectful and well-informed environment in which patients can thrive and remain healthy or regain their health.

How do you currently advocate for patients and how do you intend to advocate for patients in the future?

Even before my surgery, I assisted at the local clinic, which is part of a university hospital, in educating their new medical students. I’ve told my story, shared my body and my soul, and would like to think I have made an impact, no pun intended. 

In my early post-op days, I was also involved with patient self-help groups, albeit more as a user than a provider of assistance. I took part in an Irish TV documentary aptly named “The obesity clinic – last chance for weightloss” which aired in 2012 and has been rebroadcast a couple of times since. In future I would like to raise my activities to a wider audience and on a more organised level, which is why I joined ASOI and the EASO Patient Council. I will continue to develop and improve my amateur level knowledge of nutrition, physiology and psychology and hope to pursue advocacy and related human sciences academically.

Childhood and youth experiences of not fitting means fighting childhood obesity is a huge issue close to my heart. Having “lived” in a 200-300kg body for nearly a decade, and having experienced tremendous life changes following my weight loss surgery, I am convinced I can relate to some, if not most of the issues people with obesity have to overcome in everyday life. Reading up on the science of obesity in recent years has further shown me, that personal choice plays only a minor role in this complex minefield of genetic predisposition, environmental factors, food marketing and social pressure. I want to help improve patients’ lives and contribute to a better understanding of the disease that is obesity.

Reflections on the European Congress on Obesity: a patient perspective Ken Clare, EASO Patient Council Steering Committee

Reflections on the European Congress on Obesity: a patient perspective Ken Clare, EASO Patient Council Steering CommitteeI have been privileged to have attended four European Obesity Congresses. Over the years I have observed and have been part of the development and expansion of patient involvement in the Congress experience.

The first year of my involvement, I was invited to speak at the 2013 ECO in Liverpool, which is my home city. I was invited to speak about my experiences as a patient as part of the DORIAN project seminar. The feedback I received following the event was really positive and I made some great personal connections. I was also fortunate to have been able to attend the pre-Congress bariatric surgery session. The speakers’ dinner that year was held at the Liverpool Football Club, which had a strong global reputation among attendees.

2014’s Congress was held in Sofia, Bulgaria. I was delighted to see many more members of patient communities attending. Friendships were made and bonds were forged. We held an organizing meeting where we participated along with several key European health professionals. The conference centre that year was a daunting Soviet era building. We spent time together and discussed developing a formal organisation. The seeds of a European patient community were sown there in Sofia.

2015 saw us travelling to Prague for the Congress. Prague is a beautiful and historic city. We were hosted by Patient Council member, Alexandra Fraisova. We held our first formal Patients Council meeting. As I looked through the photographs I took at the event – it brings back happy memories.

In 2016, the European Obesity Summit was held in Gothenburg, Sweden, where we were hosted by Patient Council Steering Committee member Christina Fleetwood and  Swedish Patient Council member Orley Andreasson and his national association HOBBS. This most recent meeting saw the Patient Council reach a new level of engagement. Members took part in the opening plenary session, the media master classes and several formal sessions. We had a Patient Council lounge where we could spend time together and network between sessions and meetings, and we were delighted to welcome new members to our community.  I spoke with many professional attendees and exhibitors at the conference, and the Patient Council is now truly a central part of the European Obesity Congress process.

Although it is only August, plans are already being made for our attendance at ECO 2017 in beautiful Porto, Portugal. I would like to extend thanks to Sheree Bryant, Euan Woodward and Tommy Visscher for their professional and personal support. We also like to thank the Executive of EASO for their belief and investment in the Patients Council.

Patient Council Spotlight: Marina Biglia

Marina, welcome to the Patient Council. Please tell us about yourself and describe your personal experience of obesity:

My story is a story like that of many, a story intertwined with love and conflict with my mother. My mother was a cold woman, emotionally disconnected; now that I’m an adult I know she loved me as much as she was capable of loving, but this erases only part of my childhood pain.

The memories I have of her are only of attempts to please her, and personality upheavals and emotions so that my mother would see me, because my mother couldn’t love me. And it eventually became alarmingly clear that the only way to get her to notice me was by gaining weight.

I had no consciousness then. A young child deprived of a mother’s affection cannot understand the perversity of gaining attention finally by being supported by a dietician, identified by her mother, who put the child on a diet, and took an interest in her that to all the world might look like an unhealthy form of love.

The first dietician my mom brought me to asks: “Why bring her here, ma’am?” I was 17 years old and only a few pounds overweight. 3 pounds. 3 pounds that separated me from the love I craved. But losing the weight, I find that she still does not love me.

Control over my weight was manageable up to the time I was 25 years old. After 25, however, I could no longer manage the dieting yo-yo, the extra pounds become too much. Along with the weight grew my contempt for my mother. I began eating secretly, continuously, at every opportunity.

With my increasing weight my self hatred grew. I endeavoured to hide and become invisible; I dressed only in black or dark blue so the world could not see me.

Lies on lies: lies at home, lying to friends, lying to “experts;” I swallowed silent and desperate cries for help.

The years pass by and the anger and pain do not move from my heart; all the while my fat layer increases. I was happy and smiling on the outside and dead inside, with the classic, nervous and irritating “settlement”, giving in to a thousand compromises with yourself for any sign of love, so not to feel alone.

The lack of mother love sparked a frenzied emotional search for acknowledgement: “Look at me, I exist !!!”.
Always, I tried to be “as you want me”, a Marina that does not correspond to that buried in fat. Because Marina has lots to say NO, but she can never say NO to anyone, for fear that speaking out might deprive me of affection.

And then there were a series of family deaths, serious ones, the kind that’ll break your life into a thousand fragments, and you wonder if you shall ever manage to overcome them. My father died, as did my sister. My mother becomes sick, her illness imprisons her forever in a glass cage: Alzheimers disease.

The mother with whom I would argue, the mother who I was never able to really confront, was suddenly gone. She became a pile of bones, a hand that seeks yours, and trapped words.

“Mom where are you, how can I reach you?”

During this time, desperate for the magic wand to transform me from obesity to normal weight at the speed of light, I was lucky to find, in the most casual way, Amici Obesi Company (www.amiciobesi.it)
This opens up a world, and a new thought began to buzz in my head: I’m not bad or unloveable.

I’m not just a compulsive eater, I am compulsive in every area of my life. I am sick of compulsion 360 °. I decide to have bariatric surgery, specifically gastric banding, without delay.

It was 2004. I’m free, Mom cannot tell me what is right or wrong for me. I had reached a weight of nearly 136 kg. I’m always just looking for the magic wand.

In light of what we now know about managing obesity I sadly came to realise that I was just repeating behaviour I have experienced a thousand times in the past. I lost some weight, then a deadlock emerged. Not one gram of weight disappeared from my body. And I started looking for any way around it.

But why? Why not try to change some of the attitudes that led me to obesity?

I like to think of these most recent years of my life as a coming to consciousness, such a fantastic time that Marina is allowed, for the first time in her life, permission to be herself. So out with the black and blue dresses!

Amici Obesi is an immense help to me, and provides a place where I can meet a lot of people and test myself to see whether the Marina who is emerging makes sense, if the Marina who writes and interact on the forum is authentic.

And I am…protected by the digital world, protected by anonymity, I can really let let my story emerge.
I work a lot on myself, I experience a lot of Marine, and, slowly slowly, I begin to be more lenient with myself. Using every means to find myself: psychotherapy, reading, and many words …

Food still has enormous power over me, but I see it subside a bit more every day; it is no longer in charge. Every day that passes, I become a bit stronger and it is a bit weaker.

My new beginning led me to a gastric bypass surgery and the removal of the gastric band. With the second operation I lost 55 kilos, and I see myself without guilt, because I still feel like a fighter; I have to save myself. I know I can get better and, above all, I know, now, that my fat layer has lost its initial “utility.” I’m ready to live without this protection, I do not need more. I do not deny and reject it, as you deny past love: Obesity gave me a lot, and allowed me to be the person I am today and allows me to be able to say to that mother who is no longer alive: “I loved you so much, more than I ever thought I could”. Because only a great love could survive so much pain.

Tell us a bit about your country, Marina, and where you live:

I live in Italy, in a small town, Vercelli, beautiful countryside with rice fields.

Please share some of your favourite activities, hobbies, and interests:

My primary interest and my passion is information and treatment for obesity. I also love playing with my cats and dogs, I like listening to liri music, reading good books and writing.

Marina BigliaI’ve written two books:

 

Please tell us what is, for you, the meaning of the word “obesity?”

  • I’m not only a patient, I believe that simple and truly, I represent the disease.
  • I am not only an economic cost, I am the daughter of our European failure in prevention; all of society has helped create obesity and we people with obesity have the right to treatment.

Because it is only when I talk about obesity am I certain you know what I mean, I feel authorised to do so, especially for people with obesity, because I am like them. I weighed 136 kg. I know is what obesity is for those affected, what it means, not only physically, but emotionally and in terms of pain, shame and guilt.

And you can not be guilty of an illness.

For our societies, across European nations, the very first step will be to accept obesity as a disease.

Years of obesity have taught me one thing, essentially: that no can understand obesity like another person with obesity.

We have to convince others like us to break the silence surrounding our disease, and the one and only way to do that is through association and discussion.

  • In practice we have to fight for a right to treatment.
  • We need the medical profession to recognise our illness.
  • In addition, I think it is necessary to bring attention to the fact that obesity is a multifactorial disease.

There is no magic bullet. We need to treat each patient full circle: from psychotherapy to nutrition, and if necessary medication and surgery.

And then it is also essential, in my view, for human support from other patients, both real and virtual. Nothing gives you more strength and courage on the road to a new life than sharing and support from those who have been on the same journey. That’s why Amici Obesi Onlus exists in Italy. I hope to bring my knowledge and my experience to help other people who suffer from obesity.

I’m sure that together, we can make a real contribution!

Association for the Study of Obesity North West: Patient Council Blog

Steering Committee member Ken Clare blogs on the recent ASONW meeting

On the 12th of May I was delighted to be invited to speak at the North West UK meeting of the Association for the Study of Obesity, Obesity Management: A selection of stakeholder viewpoints was an interesting meeting with an enthusiastic audience and a variety of speakers who provided a balanced view.

Dr Ruth Carson,Consultant Lead Psychotherapist, Head of Eating Disorders Service, Mersey Care NHS Trust, kicked off the event with a great talk – “How might a psychological perspective enhance the work of weight management and bariatric services?”.

I was proud to fly the EASO Patients Council banner by sharing a presentation “My journey: Weight management from a patient perspective”. In addition to my role in the Patient Council, I am founder of online weight-loss information website WLSInfo http://www.wlsinfo.org.uk

Fiona Chan, weight management dietician, Salford Royal Foundation NHS Trust, gave a stimulating talk entitled “Dietary guidance for medical and surgical weight management”.

The session ended with Dr Juliet McGrattan, who is the Public Health England Clinical Champion for Physical Activity in the North West and resident GP for Women’s Running UK magazine, gave an energising talk:  “Physical activity in weight loss”.

Audience feedback was excellent and all agreed it was a fantastic event.

Full details of the meeting can be found here:

Obesity management: A selection of stakeholder viewpoints’. ASO North West Regional Group, Liverpool, 12th May 2016.

http://www.aso.org.uk/association/north-west/

EASO Patient Council Member of the Month Joyce Verhoeven

Please tell us who you are:

“My name is Joyce Verhoeven. I am an HR / PR & Communication manager @ Preton. Preton is known in Belgium for its precast concrete in wall and structural elements. I live with my wonderful partner, my stepdaughter (5) and our son (3). I try to combine my time-consuming professional life with my private life and add some sports into it!”

Please tell us about your county and where you live:

“I live in Belgium, a country that is known for chocolates, (French) fries, beers, fragmented politics, etc. I think the world sees Belgians as real epicureans. I live in Kapellen, close to Antwerp.”

Please share some of your favourite things (activities, hobbies, interests) 

“Although my profession feels like my hobby most of the time, spending time with my family will always be my favorite activity. My partner and I were looking for something healthy to do together and this is how we came up with Yoga. My partner can use this in his main sport (Brazilian Jiu Jitsu) and for me this sport releases all the stress and keeps me focused on my health and “must-have” healthy lifestyle. Besides Yoga, I also do high intensity cardio 3 to 4 times a week for 50 minutes.”

Joyce, what has your experience of obesity been?

My experience with obesity… I used to be obese and I still have to struggle with this every day. I was always the biggest girl in my classroom, maybe there was another girl bigger than me in another class, but I had a label: I was a big girl. Although I was practically never bullied directly about my weight (except once or twice), I felt ugly and I felt labelled. But I was/am more than a big girl. I’m Joyce, I’m passionate, stubborn, dedicated, lovable, unselfish etc.

Later on I received job rejections (3 times) because I was overweight. At the first job I was asked how I can have any discipline for hard work if I can’t have discipline around what I put in my mouth. The other two just said I wasn’t “presentable” enough for their companies. After I found a good job and performed very well… I was called for an evaluation on the other side of the country. “You are very good” they said, “you are an example for other consultants. However… if you want to grow… you should lose weight”. Turned out I really had to, because I wouldn’t fit into the car I would get (Mini). ☺ In addition to all of this, I couldn’t ski anymore because It hurt too much, my knees hurt and my back hurt. I couldn’t do a lot of things and struggled with many activities.

A couple of months later (5.5 years ago), I met with Dr Lafullarde, the nicest, honest and most respectful doctor I’ve ever met! After a lot of health screenings, he performed a gastric bypass. Weight started to melt away and since I was only 24 years old, I didn’t have much of an issue with loose skin. I lost friends, gained friends. I got divorced because, you change and the perception of “you” changes too. Your whole life changes and psychologically you can’t be ready, but patients need to prepare themselves. For 2 years afterward, I didn’t have any problems concerning my weight even throughout my pregnancy. After a while I noticed I gained weight again and at that time I started to realize… my gastric bypass wasn’t a cure for my disease or a quick fix… it was a second chance I was given by Dr Lafullarde, but now I have to work to maintain & respect this new life. I continue healthy eating and I started to work out more to lose the weight I gained. I will never, ever be one of those persons who can eat everything they want, but I will keep working on being healthy.”

What are your hopes for the EASO Patient Council at the 2016 European Obesity Summit?

“I hope at least one patient will realize they are not alone and know that there are people in various organizations who can help. I was also shocked to learn that obesity wasn’t recognized in Europe as a disease, apart from Portugal!

I hope politicians from around Europe realize this is a disease and a very serious one. When you are addicted to smoking, there are pills, patches etc. Similarly there are other strategies for addictions like alcoholism. Or let’s mention anorexia… when people are addicted to eating (and their metabolism isn’t very good…) they can’t just remove themselves from the seductive situation. They have to make a right decision 3 or 5 times a day, every day, every time.

Obesity is a modern disease and causes a lot of health problems overall. I really hope politicians and European countries can finally see this.

I also hope attention will be brought to obesity among children. A healthy lifestyle needs to start early and people should be warned about a variety of unhealthy food since a lot of parents just don’t know some foods are in fact bad for their children because perceptions can be misleading.”

How do you currently advocate for patients and how do you intend to advocate for patients in the future?

“Several patients who knew me before my surgery have asked me for advice; I try to answer them and their partners/family as honestly as possible. I think 4 people I counselled did have surgery, 1 will have surgery in the coming months and someone else didn’t, but lost a lot of weight and blogs about it. I hope I can be a support and answer questions as a beacon for patients before and after surgery. I also hope to engage with close family members and friends of patients as well as politicians and organizations needing information from a patient point of view.”

“I also hope I can inspire patients with obesity to do more sports… and not to be afraid to try. And if you skip a day… it’s okay, don’t beat yourself up and give up; keep going.”

Patient Council News: April 2016

April has been a busy month for the EASO Patient Council. Our colleague Sólveig Sigurðardóttir has been awarded a significant community prize by Fréttabladid, the largest Icelandic newspaper, for her work campaigning against ‘fat shaming’. She is photographed here with the President of Iceland Mr. Ólafur Ragnar Grímsson, who presented the award. Sólveig has been campaigning in Iceland for years on this issue and EASO congratulates her on this impressive national recognition.

EASO Patient Council: November 2015

Vicki, please tell us a bit about yourself.

I’m Vicki Mooney and I’m the EASO patient council representative from Ireland.

I’m a 38 year old divorced mother of 3 beautiful children. I am very proud to own and run Irelands only Plus-Size Modelling Agency, promoting body confidence and a healthier lifestyle and body image to all women. I am also a dynamic motivational and inspirational speaker-which is where my real passion lies. As a regular panellist on Ireland’s mid-day television programme which discusses day-to-day events and topics within Ireland, I have lots of experience in the media.

Having published my first book ‘Curve-a-licious’ in 2012, I’m currently writing my second book, which focuses primarily on life as a larger lady with mental health issues and obesity in today’s society.

My Dip in Psychology and Therapeutic Counselling, has provided an inner strength for the work I do. It has also given me a more in-depth understanding and awareness of my own mental health and obesity struggle.

I’m originally from Dublin-the capitol city of Ireland, with a population of 1.1 million out of a country-wide population of 4.8 million. However I reside now in a quaint town named ‘Kilcullen’ in Co. Kildare with my children and pets. I lived rurally for 15 years in the Kildare countryside which was quite beautiful but socially and physically had little to offer someone of my temperament and sociability. Moving to Kilcullen this year has led to a remarkable improvement in my overall health.

Please share a few of your favourite things with us, including activities, hobbies, interests:

I’m a lover of reading, and particularly enjoy 18th century and early 19th century novels. I thoroughly enjoy mediating and yoga. I love to swim as I find it’s so incredibly therapeutic and adore all genres of music from classical to Italian soft rock, to Irish traditional.

My nerdy side is a lover of astronomy and meteorology.

My interests and passion are about empowering people and changing negative ways of thinking which affect so many people from the older generation down to the youth of today.

I’m a firm believer in making a difference in the lives of people through sharing my own experiences and providing openness on taboo subjects such as obesity and mental health.

What has your experience of obesity been like, Vicki?

I have always been overweight; in fact as I went through puberty I was the same age in years as I was in stones. I.e. 15 years old – 15 stone (95kgs/210lbs) 20 years old – 20 stone (126kg/280lbs) and by time I reached the age of 28 I was 28 stone in weight (180kg/395ibs).

My obesity issue lay with the emotional overeating I did as a child which became a negative learned behaviour as I grew into an adult. When life was hard growing up, I comfort-ate to fill the void I felt inside and also to distract me from the bad experience.

This soon became a daily habit, and I found myself comfort eating sweet foods, which I had psychologically convinced myself that I felt better after eating. This was not actually the case.

At this time, I gained 1lb on average per month of my life.

As a young woman with a massive obesity issue I was frequently bullied and ridiculed. The side effect of this was a vicious circle in which I then ate to feel comfort… which in turn made me gain weight and the circle continued.

Living with obesity was and still is challenging. I had no quality of life outside my home which I shared with the man who was then my husband, and our 2 young children. I was ashamed of my physical appearance and felt I had such an incredible amount of weight to lose that I could not possibly know where to begin.

I joined various weight loss programmes such as Weight Watchers, but after a bit of success I would regain what I had lost. The reason for this was quite simple. I hadn’t dealt with or learned how to cope with my emotional eating and the psychology behind my weight.

Pregnancy with my 2 children was quite frankly horrendous. I suffered with pre-eclampsia, gestational diabetes, Symphysis Pubis Dysfunction amongst other complications during labour, which resulted in one emergency caesarean section.

As a very overweight woman, I had no self-esteem nor did I have a positive way of thinking. I was clinically depressed and felt there was no way to treat my weight problem, for which various antidepressants were of no help, due in part to the fact that they caused weight gain…

In 2004 at 27 years old I attended my GP who wrote to the weight management clinic in Dublin. 18 months later, following monthly visits to the multi-disciplinary team there, I had a gastric by-pass surgery (Roux-en-Y).

Within 14 months I had halved my weight from 28 stone (180kg/395lbs) to 14 stone (90kg/200lbs). I then became pregnant with my daughter and had a perfect pregnancy.

However, as a bypass patient I never once realised that the operation wouldn’t ‘fix me’. The bypass wasn’t the silver bullet I had hoped. I didn’t realise an entire lifestyle change was required, not just for me but for my entire family. I didn’t realise how much the bypass and dramatic change in losing 14 stone in weight would do to me psychologically as a young woman.

Unfortunately aftercare in Ireland’s weight management system doesn’t have the back up a patient requires. The multi-disciplinary team simply do not have enough support and funding from our government to provide appropriate aftercare and ongoing support.

Due to not losing enough weight, I didn’t qualify for corrective loose skin surgery so I have been left ‘half finished’ in a way – which is quite demoralising as a now 38 year old single woman.

However I have only regained 4 stone (25kg/56lbs) over a 10 year period which is certainly spells success in my eyes.

Living with obesity is a daily struggle and something I have a constant awareness of and am constantly reminded of – from before my feet touch the floor in the morning, until I close my eyes last thing at night.

Please share your reflection on the ECO2015 and hopes for the EOS2016:

The ECO2015 in Prague was a tremendous success for the Patient Council in many ways.

It isn’t often that the patient voice is heard in scientific settings, and more importantly, acknowledged by such a dynamic group of professionals with the same goal. Having this platform available and to be able to speak with so many healthcare professionals has been a major opportunity for the Patient Council. The way the Patient Council was received at the Congress was nothing short of marvellous.

Moving forward, my hope for the EOS2016 in Sweden next June, is that we as a European Patient Council, have a larger stage and voice through which we can open doors to working more closely with all involved stakeholders.

How do you currently advocate for patients, Vickie, and how would you hope to advocate for patients in the future?

In September 2015, I travelled to Brussels to participate on a panel of the meeting session ‘policies to prevent obesity-related chronic diseases’ during the EPHA Annual Conference 2015, which was hosted by Medtronic and supported by the International Diabetes Federation, European Region.

Feedback I received suggested that my participation contributed to a lively and high-quality discussion and really provoked thought on the complex issues of obesity. It was wonderful to hear that the EPHA greatly look forward to an opportunity for future cooperation with Patient Council speakers.

In addition, I attended an EASO Roundtable on Obesity in Brussels on October 13th which was chaired and moderated by former MEP, UK Minister for Health, and British MP, John Bowis.

At the event, almost 30 stakeholders took part in a comprehensive and thoughtful discussion. Participants included medical professionals, advocacy organisation directors, health care providers, European politicians, and leading European organisations.

I presented to the group on the patient perspective, making the point that treatment is a step in a larger lifestyle change and can not be seen as just a one shot fix. It is clear that there is an opportunity for Patient Council members to help healthcare professionals and policymakers better understand what patients are going through by sharing their unique perspective and experiences. I also raised awareness within the group of the importance of changing the messaging from ‘losing overweight’ to ‘becoming healthy’, which will help raise awareness of both comorbidities and essential lifestyle adaptations necessary to support patients in moving toward health.

EASO Patient Council: September 2015

Stefanie WirtzHello Steffy, it’s always a pleasure to welcome a new member to the EASO Patient Council. Tell us a bit about yourself:

My name is Stefanie Wirtz – everyone calls me Steffy. I was born in 1976 in Essen, Germany. I work as a dispatcher at the largest marshalling yard in

Europe. A marshalling yard is a large railway yard in which freight wagons are organised into trains. I work near Maschen in the south of Hamburg. I am married and have a teenage daughter.

Please describe your county and where you live:

I live in Germany, just a few kilometres outside of Hamburg. Hamburg is the second largest city in Germany and the eighth largest city in the EU. It is also the thirteenth largest German state with a population of over 1.7 million people. It is a major transport hub and also a popular tourist destination.

Steffy, please share some of your favourite activities, hobbies and interests:

I like to read and test new baking recipes to relax. When I have time I enjoy participating in sports and gardening.

I love to swim and feel at my very best in the water. My favourite destinations and activities include relaxing with a book on the Baltic Sea beach and autumn hiking through the vineyards in Rhineland Palatinate.

When possible, we visit friends in Hurghada (Egypt).

Please share with us what your experience of obesity has been like:

When I was six years old, my ‘baby fat’ became seen as overweight. Since then, my weight increased more with each passing year. In 2009 I had gastric bypass surgery and became involved and engaged for the time in self-help. With the gastric bypass procedure, I lost 85 kg; I have to work every day to keep the weight off.

In 2013, together with others, I helped found the AdipositasHilfe Nord e.V.

A nonprofit organisation, the group includes self-help programmes which support people experiencing obese and continues to accompany and help them them along their journey.

We “fight” for obese people to receive proper medical treatment in Germany. It’s a long hard road, but we are not alone. We associate with other self-help

organisations. The crucial problem before now has been this: obese people have no lobbying support.

What are your hopes for the upcoming European Obesity Summit in June 2016?:

As I am a new member of the EASO Patient Council I have not thus far participated in ECO events. I look forward to working with other members from across Europe to improve the situation for people suffering from obesity. In the future, I hope to learn from other nations’ experience and am sure my association will benefit from the wide ranging experience from around Europe.

Since 2009 I have supported obese people I work with, using self-help advice and programmes. In September 2013, we joined together with the club (www.adipositashilfe-nord.de) that set up counselling centres for obese people, and so far we support 500 people – free of charge. In the coming years we will focus more attention children and youth. We often start providing assistance and support too late; this should change.

I look forward to meeting and spending time with many new and interesting members from around Europe. So far I am really enjoying the experience.

EASO Patient Council: August 2015

Please tell us who you are:

My name is Angelika Peter, I’m 49 years old. I was born in Bonn (Germany), but I am Austrian. I work as a sales representative for a pharmaceutical company. I am not married and have no children. I studied French and English as a translator but never worked in this job and so I am not accustomed to speaking these languages anymore.

Describe your county and where you live:

I live in beautiful Austria, in Vienna.

Please share some of your favourite activities, hobbies and interests:

In addition to my job as a sales representative, I work as a stylist and an astrologer! This work keeps me very busy and I have little time left for other hobbies.

Please describe what your experience of obesity has been like:

My weight started to go up when I was in my twenties (due to use of the contraceptive pill) and it never stopped going up. Obesity is a problem that also affects my sisters. One of my sisters has had a gastric bypass; another plans to have a gastrectomy next year- I am her role model. I have not had particularly bad experiences with my weight. As a stylist I was able to look good, even with a lot of weight, but I didn’t feel good anymore and I was very concerned about developing serious health problems in my future. My blood pressure was already too high and my blood sugar was already approaching diabetic levels. I tried a lot of diets in my life and began to understand that I needed help – this was perhaps in retrospect the most difficult step for me – understanding and accepting that I needed help to manage my weight.

In 2011 I decided to have a gastrectomy and I have no regrets.

What are your hopes for the EASO Patient Council at the 2016 European Obesity Summit?

From my sister in Germany who plans to have a gastrectomy, I know that German patients have a longer course of nutrional counseling, both before and after the surgery, and it would be great to hear protocols from other countries and discover how other European nations manage their patients. I could then use this information perhaps, to work towards ameliorating challenges in the Austrian system and improving the protocol for patients in my country.

How do you currently advocate for patients and how do you intend to advocate for patients in the future?

Before this time, I only have experience advocating for my German sister, but believe it is crucial to support patients before during and after gastric surgery and look forward to working toward improving support for persons with obesity nationally.