EASO Patient Council: July 2015

Carlos, please tell us about yourself:

Carlos Oliveira

Eu chamo-me Carlos Oliveira, sou Capitão da Marinha Mercante, Licenciado em Gestão Portuária e Tecnologias Marítimas, fui até 31/12/2013 Director de Operações Marítimo-Portuárias do Porto de Sines, actualmente estou reformado e sou Presidente da Direcção da Adexo – Associação de Doentes Obesos e Ex-Obesos de Portugal era há cerca de 15 anos um obeso mórbido com 152 Kg.

Carlos Oliveira

My name is Carlos Oliveira, I am a Captain in the Merchant navy, and I am a Bachelor in Port Management and Maritime Technologies.

Until 31/12/2013, I was Director of Operations at the Port of Sines.

I am now retired and I am the President of Adexo – Obese Patients Association of Portugal. For about 15 years I was morbidly obese with a weight of 152 Kg.

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

Por força da actividade profissional vivo em Sines e em Lisboa.

Cidades totalmente diferentes, Lisboa é a capital de Portugal e é uma cidade linda onde o Rio Tejo e as suas margens são o elemento agregador da comunidade.

Sines é uma cidade pequena com origem numa vila piscatória e onde está actualmente instalado o maior porto do país.

Este é um pequeno país europeu com graves problemas económicos, muitos deles impostos pela adesão á comunidade, mas é o país do SOL com um clima temperado muito agradável.

My professional activities have been splited between Sines and Lisbon.

The two are totally different cities. Lisbon is the capital of Portugal and is a beautiful city where the Tagus River and its banks are a key element of the community that bring people together.

Sines is a small town originating from a fishing village and is currently the largest port in the country.

Portugal is a small European country with serious economic problems, but the country is lovely and SUNNY, with a very nice temperate climate.

Please share with us a few of your favorite things (activities, hobbies, interests):

Quando a minha perna permite, gosto de andar, ou andar de bicicleta, gosto de cinema de ficção científica, tenho uma relação muito próxima com a informática e gosto de nadar.

When my legs permit, I like walking or cycling. I also enjoy science fiction cinema, spend lots of time on the computer and I like to swim.

Describe what your experience of obesity has been like:

Em jovem nunca fui gordo, praticava Judo, basquetebol e ginástica aplicada, aos 23 anos 1977 embarquei, deixei de fumar e comecei a engordar.

A minha vida começou a ficar mais complicada de pois dos 45 anos, quando aos quilos em excesso se foram adicionando dificuldades respiratórias, pernas muito inchadas e com derrames, dificuldades de dormir deitado, apneia do sono, cansaço excessivo, tensão arterial elevada e por fim um quadro pré-diabético.

Mais complicado ainda foi o facto de que tudo isto apareceu no espaço dum ano e reduziu-me a mobilidade causando problemas quer a nível familiar quer a nível profissional.

Recordo o sofrimento e a vergonha por que passava quando subia meia dúzia de degraus e ensopava uma camisa em transpiração, quando precisava de utilizar uma casa de banho num qualquer restaurante ou café e não tinha espaço para me limpar convenientemente, quando tinha de pedir ajuda para calçar umas meias ou quando ficava entalado numa qualquer cadeira de café ou mesmo quando as partia e parti algumas.

A discriminação social era também um problema diário, numa sociedade que á data considerava a obesidade como um estado da responsabilidade do gordo e não como uma doença da qual o mesmo gordo é dependente.

O trabalho da ADEXO tem dado frutos positivos e hoje muita gente olha já para um obeso com olhos diferentes aconselhando-o a procurar ajuda, porque o entende como um doente.

E FOI AQUI QUE DECIDI ALTERAR A MINHA VIDA

Nesta fase procurei uma ajuda e felizmente descobri uma equipa médica que trabalhava com a Banda Gástrica e que foi para mim a tábua de salvação num dos piores momentos em termos emocionais da minha vida.

Não posso passar à frente sem agradecer a toda a equipa médica que me ajudou nessa altura e que ainda hoje me ajudam.

Mas foi aqui que toda a minha vida deu uma volta de 180 graus, perdi rapidamente 30 quilos e seis meses depois tinha melhorado os valores das análises, dormia deitado, conseguia descansar, subia uma escada a correr, mas foi mais ou menos um ano depois com 40 quilos a menos que algumas coisas passaram a ter outro significado.

Não imaginam a alegria que tive quando pude “ir aos saldos” e encontrei roupa que me servia e que antes era praticamente impossível, ou quando pude almoçar normalmente num avião sem necessitar estratagemas estranhos uma vez que enquanto gordo não conseguia baixar a mesa ou ainda quando pude voltar a almoçar num qualquer snack-bar onde em tempos não cabia nas cadeiras do balcão.

Por outro lado, passados 2 anos sobre o início deste processo todos os quadros clínicos que não estavam bem na altura da cirurgia, desapareceram, a minha qualidade de vida aumentou a minha auto-estima permite-me hoje, 15 anos depois, controlar com dificuldade o peso que tenho porque uma coisa eu sei que não quero voltar a ser como era.

As a youngster I was never fat person, I did practiced Judo, basketball and gymnastics, and at 23, in 1977, I started to work on Portuguese tankers, and also I quit smoking and started to put on weight.

My life has become more complicated at the age of 45 years with the acquired excess weight.

I experienced breathing difficulties, very swollen legs and strokes, difficulty in sleeping lying down, sleep apnea, excessive tiredness, high blood pressure and finally a pre-diabetic diagnosis.

Even more complicated was the fact that all of these challenges appeared in the space of a year and reduced my mobility, causing problems both at home and at my job.

I recall the suffering and shame I experienced when going up half a dozen steps with a shirt soaked in sweat, or the need to use a restroom in any restaurant with no space to clean up properly, or having to ask for help dressing stockings and even getting stuck in a chair even after losing some weight.

Social discrimination was also an everyday problem; I live in a society that considers obesity as a state where the overweight should take personal responsibility and not as a disease.

The work of ADEXO has given positive results and today many people already look at an obese with different eyes, and with greater understanding for the patient.

AND IT WAS HERE THAN I DECIDED TO CHANGE MY LIFE

At this stage I sought help and luckily found a medical team working with the Gastric Band and that was for me a lifesaver in one of the worst moments in emotional terms, of my life.

I cannot go ahead without thanking all the medical team who helped me at that time and that still help me.

But it was here that my life has turned around 180 degrees. I quickly lost 30 kilos and six months later I had greatly improved blood analysis and health. I slept lying down, could rest, and climb a ladder, but it was about a year later with an additional 40 kilograms of weight loss that things had another meaning.

One cannot imagine the joy I experienced when I could “go to the sales” and found clothes that fit me and that was before virtually impossible, or when I could have lunch normally on a plane without having strangers stare since as “fatty could not open the table” or when I could go back to having lunch in any snack bar where for once I wasn’t required to occupy an uncomfortable counter seat.

From a medical perspective, two years after the start of this process all clinical conditions that were not ok at the time of surgery disappeared, my quality of life has increased, my self-esteem allows me today, 15 years later, to control (with some difficulty) the weight that I have now because I know I do not want to go back to my life the way it was when I was morbidly obese.

Can you reflect on our the ECO2015 and share your hopes for the ECO2016?

É importante que exista uma organização na Europa que possa congregar as associações de doentes pois estas não conseguem ter fundos para suportarem os custos duma campanha europeia.

A EASO pode ser essa entidade e espero que o trabalho que foi iniciado há dois anos não seja interrompido e dê frutos visíveis já no próximo ano de 2016.

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

Os doentes não podem ser entendidos apenas como elemento demonstrativo da doença mas sim como parte activa nos caminhos existentes ou a criar para o tratamento ou controle da mesma.

Todos sabemos que, à semelhança do diabético que tem uma resistência à Insulina, o obeso é resistente à Leptina e não consegue controlar os estados de fome.

É pois fundamental incrementar a investigação científica a nível Europeu nesta área, para tentar minimizar, controlar ou mesmo curar estes doentes.

O lançamento duma campanha Europeia para que os laboratórios especializados possam ter verbas para programas de investigação sobre a resistência á leptina é fundamental para que se entender e combater esta doença.

Patients cannot be seen only as experiencing disease element; we must all have an active part in creating opportunities for treatment and control of obesity.

We all know that, like the diabetic who has a resistance to insulin, the obese is resistant to Leptin and cannot often control his hunger states.

It is therefore essential to increase scientific research around obesity at European level and try to minimize, control or even cure these patients.

The launch of an European campaign so that the specialized laboratories may encourage more funding for research programs on resistance to leptin, is crucial in order to understand and fight this disease.

EASO Patient Council: May 2015

EASO Patient Council Member of the Month: Magdalena Gajda

Please tell us a bit about yourself:

My name is Magdalena Gajda and I represent Poland for the EASO Patient Council. Since 2013, at the request of the Polish Association for the Study of Obesity, I have been acting as the Public Advocate for People with Obesity Disease. In 2014, I established the OD-WAGA Foundation for People with Obesity Disease, which supports my actions. It is the first Polish non-governmental organisation protecting human, patient and civil rights of children, youth and adults suffering from obesity disease.

What have your experiences of obesity been like?

I have been suffering from obesity since early childhood. When I was one year old, doctors diagnosed me with some disorders in my hip joints and I was immobilised with the use of an orthopaedic traction for two years. They saved my legs – I am an able-bodied person, but after I was released from the traction, I started to gain weight. That was in the 1970s. My parents looked for a medical treatment for me, but at that time childhood obesity was not commonly discussed. I was prescribed many diets, herbs and slimming massages by paediatricians as well as hypnosis, acupuncture and acupressure. None of these actions brought results.

In 1996, I learned that bariatric surgery procedures were performed in Poland. At that time I was 25 y.o. and my weight was 152 kg. So I underwent my first bariatric surgery in 1996 and it was the Mason procedure. After this surgery I lost 82 kg within 6 months! Unfortunately, I lost the weight too fast. I felt bad physically – I was very weak. Mentally, I felt even worse and fell into depression. I suffered from suicidal thoughts. Doctors decided that I had lost too much weight and ordered me to gain it again. I was supposed to gain 15 kg, but the disease “flared up” and I gained almost 70 kg. In 2010, I was diagnosed with knee joints in very poor condition. The orthopedist warned me that unless I lost weight, he would have to replace my own knees with artificial ones. It was at that time that I underwent the second bariatric surgery – it was a gastric bypass surgery procedure. As a result I lost 68 kg. This was 5 years ago and since then my weight has remained at the same level, about 80 kg.

I have come to understand that there is no cure for obesity. You can only learn how to live with it and hope to control it, but it is not easy…

As a child, teenager and young woman I suffered a lot because I was obese. I was offended, derided and victimised. I was often beaten as well. When I was 13 years old, I was stoned by my classmates… I did not understand why people were so cruel to me. And the only difference between us was the thickness of the adipose tissue… I did not complain to my parents because I was ashamed that people treated me so badly. Everybody told me that “being so fat was my own fault”. So, I used to hide from people and cried silently, so that no one heard me…

Actually, I spent the first half of my life crying… This is what I told a journalist who asked me in 2013 to tell her about my life. She wrote an article about it and this article was published in one of the top Polish newspapers. The article has provoked a discussion on discrimination against people suffering from obesity disease in our country. And the journalist, Ewa, has become one of my best friends.

Please share some information about yourself your activities, hobbies and interests

I have been a PR professional and journalist for 20 years. I worked for television, radio, press and internet media. My areas of expertise are health, social issues and issues surrounding people with disabilities. I have written and published over 1.5 thousand articles. I had wanted to be a journalist since I was a child – to write and to learn how to talk with people. My interests include also theatre and the theatre production process. My hobby is cooking and my friends say that I cook quite well… I also read a lot of books. My challenge for this year is to read 152 books. I have already read 20…

I also used to perform live stand-up comedy and did this for two years. Thanks to this, I cope with public speaking well. And since I have lost my weight, I enjoy walking very much. I also enjoy bowling and playing badminton.

Please tell us about the country you live in:

It is estimated that about 64% of men and 46% of women in Poland suffer from overweight and obesity. I established the OD-WAGA Foundation in our country. The key-word here is “OD-WAGA”: In Polish, the word “odwaga” is an equivalent of the English word “courage”. OD-WAGA refers to the courage and tenacity in pursuing goals; the prefix “od-” means “reducing”, “minimising” and the noun “waga” means “weight”, therefore in this context OD-WAGA refers to the process of body mass reduction. And in Poland you still must have a lot of “odwaga”, that means you have to be really brave to fight against discrimination of people suffering from obesity disease. As it was introduced only in 2013, weightism has been still a new social phenomenon in our country.

People suffering from obesity disease are the most discriminated social group in Poland. We are, in public and with no consequences, derided, abused and offended – at shops, in the streets, in media, films and advertisements. We are also treated worse than others in healthcare settings, for example, and in the labor market. Many people in our country perceive obesity as the result of laziness, lack of physical activity and poor diet; obesity is not acknowledged as a complicated disease requiring a medical treatment. We do not have doctors specialised in the medical treatment of obesity – obesitologists; our family physicians do not know how to treat us either. In Poland, only the complications of obesity are medically treated, e.g. diabetes, and not the obesity itself. The law does not regulate the activity of slimming products’ manufacturers; in particular there are no regulations in scope of advertising such products. People suffering from obesity become victims of cheaters and spend a lot of money for products that do not help.

In Poland, you can receive a certificate of disability only if you suffer from other diseases, and not because of obesity. And without this document, people suffering from obesity are not authorised any financial relief or privileges available to other ill and disabled persons. The situation of those suffering from severe obesity – BMI 50+ (over 150 kg) is particularly desperate in our country. We do not know how many there are because these people stay at home; their families hide them and are ashamed of them. We hear about them in the media describing cases of firemen crashing through house walls in order to get them out and transport them to hospital.

Your reflection on ECO2014 and hopes for ECO2015:

I was afraid of coming to Sofia for ECO2014, thinking helplessly: “I do not have anything to boast about…”. But when I was speaking about the situation of the Poles suffering from obesity and the colleagues from other countries were nodding their understanding, I understood that the movement for rights protection of people with obesity disease has only begun.

And I am not afraid of ECO2015 in Prague, because I have a lot to boast about… within one year, the OD-WAGA Foundation has become “the voice” of Poles suffering from obesity disease. We have become a social partner of the Polish Parliament, the Ministry of Health and other authorities. Our Foundation Experts consult to develop new legal solutions for preventing and treating obesity. Whenever there is a topic related to obesity, the media contacts us to ask for information and request commentary. As a result the OD-WAGA Foundation experts have commented in over 100 publications of major Polish media. My colleagues from TV say that whenever I, ‘the Advocate’, appear on air, audience ratings grow quickly. And I answer: People listen to me because I know what obesity disease and weightism are, they listen because obesity disease is present in each Polish family and because people “are fed up with the bullshit” that one will cure obesity by eating carrots!

The largest problem is the lack of money for the Foundation actions. There are no financial resources in the Polish national budget for people with obesity disease and our society prefers donating for animals than for humans suffering from obesity.

In my opinion, EASO has had a great idea in supporting an Advocate for Obese Peoples’ Rights representing each member state. The Polish experience proves that everybody listens to the Advocate. However, I think that the Council should appoint a Chairman and deputies to lead the work of the Council between the annual meetings. Annual meetings are not enough for one to be treated as a partner by the European Union, WHO and UN. The Patient Council should also have a headquarters office. What is more, I think EASO should issue certificates for all Members of the Patient Council to confirm that a particular person is a representative of a particular country.

Then, I believe that the authorities in our countries will treat us more seriously than they do now. Personally, I miss knowing about current events taking place in other countries. Perhaps every two months the Advocates should prepare newsletters for the Council to inform colleagues about current events that are important for people with obesity disease, e.g. new legal solutions, new social campaigns, etc. In my opinion, the Patient Council should also start working, as soon as possible, on the first world Charter of Rights for People with Obesity Disease and strive for this Charter to be signed and respected by each of the EASO member states.

Future of people with obesity disease…?

I believe that people with obesity disease could simply live normal lives if only the world would recognise that obesity not as an individual choice of every single person, but as a complicated disease. Then we will be treated with the same respect as other patients and we will receive appropriate healthcare and social assistance. People would then understand that we just want to be positioned fairly in the legal, healthcare and social security systems existing in every member state.

EASO Patient Council: April 2015

This month we introduce Patient Council member Judit Pettkó

Please tell us who tell us you are:

My name is Judit Pettkó and I have lived in Budapest, Hungary since I was born. I grew up in a downtown flat and about 15 years ago I moved into a family home. Shortly after receiving a masters degree in chemical engineering, I started working with a pharmaceutical company. As a Regulatory Affairs Associate for nearly 20 years, I have been dealing with preparation of the documentation required for Authority approval of our medicines and the maintenance of these licenses. Although my work is interesting and multifarious, it has meant at least eight hours sitting at my computer daily, a major factor in my development of disease often associated with sitting, which has had a significant impact on my weight.

Please share a few of your favourite things (activities, hobbies, interests):

One of my favourite hobbies is reading. I read almost every evening and whenever I have a little free time. My other love is swimming. Since childhood, I have enjoyed swimming, which became my sport as I was unable to successfully engage in other childhood sports. I am lucky enough now to have two swimming pools in my neighbourhood so I have easy pool access, and in summer the beach also offers plenty of opportunities to swim. In addition, I really like to take short hikes in the hills. Last year, my knees become diseased, so unfortunately I cannot hike presently, but I have taken short and longer hikes at least once a month in previous years. In 2013, I hiked the twelve kilometres all the way up to the second highest point in Hungary, which has an altitude of 600metres!

Share what your experience of obesity has been like:

My obesity is the result, I believe, of several combined factors. Firstly, my genetic background and early childhood environment must have been key factors, as I have been overweight since I was very young. My parents paid attention to my eating, and insofar as they could, supported me to engage in sporting activities too. This seems to suggest a genetic predisposition to obesity.
On the other hand, I’m also obese due to bad eating habits. I eat with pleasure and joy, which would not be a problem if I could remain moderate, but unfortunately in stressful situations and sometimes when I am simply bored, I overeat, without regard for the consequences of this behaviour.
Third, but not least, my relatively sedentary lifestyle also plays a role in my obesity.

As a small child, I did not move regularly (with the exception of swimming lessons). Later, due to my overweight, gym classes at school left me with feelings of failure. I was in a “sport class” between 9-14 years old, but it did not help, and left me feeling quite discouraged. Since I work, I try to exercise at least twice a week (usually with major or minor interruptions). I also try to swim or make excursions to the hills whenever I can, but these activities are rarely able to compensate for the daily lack of movement in my typically sedentary life.

I’ve tried several times to reduce my weight, and have twice succeeded in losing significant amounts of weight. In these cases, I have changed my entire lifestyle, shifting from doing occasional exercise to committing to regular everyday sport and activity. I walked at least half an hour (alongside a creek not far from my house) and my diet was carefully selected, with restricted calories as well. I received medical assistance too; every two weeks my condition was evaluated and I consulted with a private obesitologist. Unfortunately, initial “successful” weight loss results disappeared and challenging personal circumstances derailed my efforts. The construction of my house almost failed, after having expended all our savings, and we had to take an extra loan in order to make it habitable.

Ten years later, I decided to take control over my life and weight again. I thought that this second successful weight loss and lifestyle change would be the final one. Though I was still not normal weight, I was satisfied with the results. However, last year after having health problem that involved my knees, I had to stop all exercise. My knees are still recovering. Now I cannot move at all in the way I enjoy; I can’t do long distance walking or go to gym. As a result, my weight rapidly increased, which in turn exacerbates the difficulty with my knees. At present, my main goal is healing my knees in order to enable them to bear weight again. This will make it possible for me to re-start the regular sport activities which would help me to reduce my obesity.

Your reflection on the ECO2014 and hopes for the ECO2015:

Before the Patient Council Meeting in Sofia, I was looking forward to learning about options for an overweight or obese person in other countries. I wondered, for instance, what kind of public or NGO assistance is available or provided to those individuals who are determined to reduce their body weight and about differences in social status of people affected by obesity in different nations: are they discriminated against or accepted?

I found the meeting in Sofia very interesting and instructive. The Congress provided lessons for a lifetime through learning about the experiences of people in the other countries represented. This led me to recognise that although public healthcare is different across European countries, our problems are similar. The meeting confirmed my belief that we overweight and obese persons have to take action together and represent our special needs to healthcare professionals and policy makers alike.

I am looking forward to this year’s summit in Prague too, as I hope that we will issue a Declaration in order to encourage national healthcare systems to pay more attention to our special needs, and to provide the necessary support to all those who want to reduce their weight and manage obesity-related health problems.

About your county and where you live:

The overweight or obese are in quite difficult situation in Hungary. In everyday life, an overweight person can experience discrimination such as during job searches and at work, where one can be at a disadvantage because of overweight or obesity, even in instances where the condition does not have a direct affect on your work. On the other hand, development and provision of medical support is still in early stages. There are only few public centres dedicated to the treatment of overweight and obesity, and in these centres relatively limited tools are available for physicians and other professionals.

I would like to emphasise that GPs and other physicians in primary care have limited knowledge about publicly supported treatments and therapies, so only a small subset of patients will receive sufficient advice on treatment options.

In private medical care the situation is better, but this is accessible to a limited number of patients only.

In order to disseminate results of studies and research in obesity, the Hungarian Society for the Study of Obesity regularly holds conferences and workshops. The HSSO will host the 5th Central European Congress on Obesity (CECON) in Budapest in October.

How you currently advocate for patients and hope to advocate for patients in the future:

I am working with the Hungarian Association for Overweight and Obese as president. This NGO was founded in 1999. Upon further developing membership, over a few years we have grown to 300-400 active association members. In addition to the assertion of patient rights, we strive to encourage and provide regular exercise for members, while professionals who help manage patients’ conditions give presentations about obesity to members. Due to some changes in both the healthcare system and the legal environment, the Hungarian Association for Overweight and Obese is currently under reorganisation. In addition to completing the reorganisation process, we would like to continue – along with the other tasks – providing access to sporting activities and exercise, and organising presentations for our members. The future is bright if we all work together for common goals.

EASO Patient Council: March 2015

Alexandra Fraisova Patient Council Spotlight: Alexandra Fraisova

Please tell us who you are, and about your experience of weight and obesity:

I am a literary scout, translator, a former dancer and a flamenco dancer, a personal trainer and a lecturer – it’s quite a lot for one person, isn´t it? I am also a patient, striving to get back to my ideal weight.

As a dancer and athlete, I was able to maintain my weight until my last major injury four years ago. Due to an GI illness (that got a bit better after a surgery a couple of years ago, thankfully) and medication, and due to a couple of weeks of walking on crutches I became bigger and bigger. It wasn’t dramatic to some, but I was still some 25 kg more than I was accustomed to. And I could not shift the weight.

Of course I started looking for a solution. I have studied nutrition and was working out a lot. I sought professional help, and worked on my psyche and thought patterns. Nothing worked. It seemed that my medication played quite a big role in my inability to lose weight. And it seems that I have developed a minor metabolic issue as well, due to my GI illness.

When I discovered it wouldn’t be easy to lose the weight, I began to study nutrition and working with the psychological aspects of managing and maintaining weight-loss and also living with weight you would rather not keep. Thanks to this, I have received an offer to be a lecturer of STOB (Stop Obesity), an excellent organisation offering help to everybody seeking to lose weight.

Before that, I was myself a member of this community and a user of its weight-loss programmes. I was quite an active member, that´s true; this is likely the reason I was asked to join the lecturer circuit. I have humbly accepted this opportunity. My work is mostly done via the internet through our community web page, where I work as an advisor and help to motivate others.

I am a good example of a middle-aged overweight woman, a typical example of our most common user. I know what members of our STOB community are going through, as I have been there, and had this experience myself. I can offer help, advice, motivation and am happy to share my experience and knowledge. I try to help others find their way.

It still isn´t easy for me to lose weight; I have to use my medication permanently and I also have to work around my metabolic challenge, but I´m not giving up. And I support the idea that being fit and a little bit fat is always better than being just thin and not able to do a pushup.

As a member of STOB community and also as a member of the EASO Patient Council, I support the idea that it´s important to educate people, to demonstrate reasonable options for weight-loss (not some crazy fancy diets but healthy eating and healthy exercising), to work with motivation and support healthy thought patterns. The psychological aspect of weight-loss is very important and is actually the specialty of STOB. We not only offer tools for developing and maintaining food and exercise logs, but we also work with thought patterns and motivation of our members. Crucially, we offer them connection to a community of people because we’ve discovered that group motivation and support is extremely valuable tool in weight-loss and weight maintenance.

I don´t only talk about it, I also walk the talk! I still work out a lot, do some weightlifting, and of course, I still dance flamenco which is a great passion of mine. In my spare time, and mind you, there isn´t much of it, I love cooking – that´s why I have to work out so much! I love Italian food (I spent some time in Venezia and fallen in love with their cuisine), as well as all Mediterranean food and culture, I must say. And if I am not cooking or dancing or power-walking or doing poweryoga, I love going to watch dance performances and shows and ballets (with a bit of nostalgia. Although I was not a classical dancer, I did modern and jazz dance). I also enjoy hiking.

You can see that I am a very busy person, but I strive to find time for relaxation and entertainment too. It all goes back to the balanced perspective and psychological aspects of the STOB programme mentioned above!

As many of you know, I live in Prague. I’ve travelled a lot in my life and can honestly say that Prague is one of the most beautiful cities in the world – as you will all see in May when you attend the European Association for the Study of Obesity’s 22nd annual Congress.

I hope to welcome you all here. Though I can´t promise that I will cook for you, I look forward to talking with all of you at our Patients Council dinner.

EASO Patient Council: January 2015

Spotlight on Sólveig Sigurðardóttir

Sólveig Sigurðardóttir

Please tell us who you are:

My name is Sólveig Sigurðardóttir

I am married with two children, age 11 and 16. We have a dog and two cats, and I am 46 years old. I was diagnosed with MS a few years ago; this condition left me very fatigued and unable to work. Today I am working part-time as a consultant, promoting clean eating and a happier lifestyle. I also help people move out of the vicious circle of bad eating habits. I also hold conferences about healthy eating and the effect it has on both body and soul.

Please tell us about your county and where you live:

I am from Iceland and live in the Capitol, Reykjavik, but I was born in Hafnarfjordur, an old fishing village. It was wonderful to spend my childhood by the sea.

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

I am very interested in clean eating; I live and breathe a healthy lifestyle. Today I can say that my passion is all about working out and eating right. I work out five days a week and am very active. Everything that has to do with healthy living is my favourite thing!

I attend lectures and workshops about a healthy diet. Everything about healthy eating for the whole family fascinates me. I also love to travel and see new places, and even studied travel and tourism a few years ago in Cyprus.

What has your experience of obesity been like?

I have been overweight ever since I can remember. Even as a child I was heavy, then as I entered my teen years I became very overweight. Over the years I tried all kinds of dieting, and even almost starved myself to death with the intention of achieving a slimmer body.

Today I look upon these methods as cruelty. To control excess weight, we have to start by being comfortable with our own bodies and treat ourselves well. Being kind to ourselves means we will stop using food for comfort or as a prize. We actually have to start looking at our relationship with food from a new perspective.

I was in an automobile accident at the age of 10 and my back was badly broken. It took me a long time to recover from the accident and I experienced difficulty moving for a long time afterwards. As a result, I packed on the pounds. During this time I couldn’t participate in sports, and I loved my food. I found comfort in eating.

In my teens I started trying all sorts of extreme diets, often with “positive” results when I stepped on the scales, but both my body and spirit were starving. I was always pretty quick to gain all the weight back when I started eating aggressively again…

A few years ago I had had my fill of obesity, and today I am 52 kilos lighter than my heaviest weight. My spirits have lifted so much by losing all this excess weight and just enjoying life! Today I enjoy practicing sports very much.

Additionally, a few years ago I was taking many strong prescription drugs for MS, and also for fatigue. I also took a lot of over the counter pain killers and couldn’t sleep without the help of sleeping pills. I had heartburn constantly and was chewing tablets all day long as a result.

Today I am drug free and use clean eating and exercise as my cure. By changing my lifestyle I have started living again!

Please share your reflections on the ECO2014 and hopes for the ECO2015

I was very pleased with our meeting and the conference in Sofia, Bulgaria. It was very interesting to listen to and meet other people in the same situation as I was. Good people are striving together towards a better and lighter lifestyle for us all. Obesity is a terrible disease that is literally dangerous to our health and happiness. If we don´t all work together to help others, it will be devastating for society. It is good to know that most countries in Europe are indeed working on prevention programs and there seems to be an awakening towards living a healthier lifestyle.

I am very optimistic about ongoing teamwork between us all in the coming years.

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

Today I am a spokesperson for clean eating and a healthier lifestyle, I work to help people find this path. I give lectures and counsel people about ways to go about changing their eating habits and lifestyles and I will continue to do so! I also have a Facebook site with a huge following and I blog about good eating and a healthy lifestyle. I write for a health-site online and am also a blogger for major news media in relation to healthy lifestyles. I can see myself working at this in the future and am looking forward to keeping up the good work that we at Heilsuborg in Reykjavik are doing.

Heilsuborg was my starting point, the vehicle that sent me in the right direction. I committed myself for a year in the beginning and I have achieved astounding results. Today I work with one of the doctor/owners there at Helsuborg (Healthcenter). Heilsuborg has a variety of solutions for people who are seriously overweight, and also offers solutions for those who need help with other problems.

Today I believe we need programmes for families battling obesity, in order to guide them out of the vicious cycle and into the virtuous circle. It is hugely rewarding to see people change their methods and diets and observe the transition to eating good, clean food. People working toward the clean eating approach try to eat as little as possible of fast food and food that has been processed. Preferably we will cook our own food from scratch. We all need to find our own rhythm in a workout or exercise and to feel how rewarding it is to let the body work a little!

I do believe that people want good things for themselves and their families, and really want to feel better. I feel that people are awakening to life, sitting up and taking note of their eating habits.

Here in Iceland we are all awakening to life and we are fortunate to have the option of choosing healthy restaurants as there are many to choose from. On a sad note, food is expensive here in Iceland, particularly if you choose to buy health foods.

So, we keep on striving.

Sending my best wishes to you all.

EASO Patient Council: December 2014

Spotlight on Christina Fleetwood

Christina Fleetwood
Christina Fleetwood

Christina, please tell us a bit about yourself. Well, I am now 68 years old. I was born and since 1980 have returned to live back in Stockholm, Sweden. I had an 8 year long experience living in the USA during the 70’s. While in Portland, Oregon, I met a wonderful life partner. David, who is younger than I am, has been an opera singer and changed careers, switching to social work, and is now doing research and development work on collaboration within the field of social psychiatry. We have a lot in common and share

many ideas and principles, including the concept of Recovery. Classical music is a large part of both of our lives, and we both also enjoy feel-good movies and BBC productions.

Throughout my life, I have been interested in society and the way it works. During the 1960s I studied social and political science, eventually focusing on disability issues. I joined a Masters Program in San Francisco on visual impairment. This was during the time of the Independent Living Movement. E. Goffman’s book Stigma was assigned as course reading!

Since this was the 70s, it was also a time when people were freely exploring lots of Personal Development issues and activities, and folks were talking openly about racism, sexism and other kinds of bias. I taught classes at the Portland State University on “Able-bodyism”.

In the mid 1980s, I was suddenly diagnosed with epilepsy. Having worked professionally with rehabilitation really helped me, and during the past 15 years I have not experienced seizures but still take medication. I felt it was important to become involved in the Disability Movement and eventually returned to studying – this time for a Masters in Public Health. This was my way of confirming my brain still functioned! I also started conducting research, working towards a PhD with focus on Collaboration between Disability/User Organisations and Health Policy. I became somewhat side-tracked as I was also teaching at Stockholm University while simultaneously taking on the chairmanship of the Overweight Association. I have been involved in getting a grant for a 3-year project developing courses on “Health Independent of Size”. This is now on year 2, the first courses have begun, and I have transferred responsibility to the “younger and eager” so that I can relax and focus on issues around obesity and Weight Stigma for the public and health professionals. Hopefully I will also find time for my own research.

Please describe your personal experience of obesity.

Being a child during the post-war period, there was a un-discussed rule that you finish up everything on your plate, whether you had asked for what was there or not. The impact of

this old rule is still with me and causes trouble! At the age of 6 I started ballet lessons and the instructor contacted my mother to inform her I needed to lose weight. As I came from a family with solid genetic make-up for obesity, this was the start of my career as a fat person! I was 8 years old when I went in for my first hospital visit, ostensibly to check-up the status of my thyroid function. This was just the beginning; I spent about one full year between the age of 8 and 22 in hospital, taking on various weight loss programs. One of these (research) programs included a 0 calorie diet which only permitted water and synthetic vitamins and minerals. The first time was intended to be 40 days but they stopped me for cheating after 37 days. I wasn’t cheating, I was just no longer able to lose weight. My body had obviously adjusted as to crisis situation and adjusted my metabolism – a condition recent research has been able to prove. A few years later, a car accident left me sitting in wheelchair with a severely broken leg. As I didn’t think this “diet” had caused any damage – I asked for another chance at the “starvation diet”. This time I went without nutrition for 61 days. The same thing happened, I stopped losing weight but anyway – came out thinner and with some lovely woollen blankets that I had made during therapy. Looking back on this hospital period in my life I hear a whisper “Go to jail, go directly to jail, do not pass go!”

The 60s were quite harsh on individuals with any kind of eating disorder. One day I was sent down for “a photo session” without neither information nor consent. Three of us were included and were instructed to strip: “Now, take off all your clothes, we will take some pictures”. What for??? We had no idea! There we were, the three of us, teenagers, two with large bodies and one with almost nothing left on her body. We were not even allowed to cover our faces!

My school years were, of course, affected by my size. I was discounted, they let me be gone to hospital for 6 or more weeks during school year. The worst was the gym classes. Our school was training ground for gym teachers, and they were uncomfortable with a fat child who didn’t do well in sports. Dancing has always been great – except when the teacher- trainees giggled embarrassedly about me in a group playing Butterflies. There was an option for the girls who weren’t up to training that week to take a walk with Bobbie, the gym poodle. So I was always directed to Bobbie and always had company. But …. at the end of the term I was sent to the school doctor who explained to me it was “psychologically dangerous for a fat child to take part in gym class”. Because of this I was “liberated” from attending gym classes for the rest of my school-life. The alternatives were coffee, a muffin or a cigarette instead of a pleasant walk with Bobby …. but gym teachers were spared from being confronted with a fat girl who liked to dance.

Over the years I have gained and lost a considerable amount of weight. Ironically, people were not always positive when I got thinner, and some were positively threatened by the fact I had changed identity; people around me were uncomfortable with this new person. And I didn’t recognize myself. It isn´t only your body that becomes thinner, your brain has to get adjusted to that too. 20 years ago I lost about 40% of my weight. One day I met a person who refused to recognise me, she went behind my back to see if she could find the rest of me, but no…. it wasn´t there! Another time I met one of the rehab staff, she looked at me and said “I didn’t think you were going to keep yourself like that!” Well, she was right – I gained back a fourth of what I had lost but have since found what might be my own “setpoint” which I recognise and feel comfortable with.

Reflection

Weight is not a good indicator of health! Research shows that stress is the best indicator of un-health. Shame is a confounder between stigma and stress. Thus stigma leads to shame, leads to stress, leads to diabetes, to heart and lung problems, to cancer etc. It doesn’t matter if shame is based on being poor, fat or disabled, these are all conditions for which the individual is often is blamed. Based on this by now well established research, it seems more appropriate to stop on-going weight stigma, removing shame and encouraging healthy self confidence, rather than focusing so much attention on weight loss which is very ineffective, with a failure rate of about 90%. And so called “yo-yo dieting” can create a situation of weight fluctuation more dangerous than keeping the weight and focusing on other ways to gain health.

EASO Patient Council: November 2014

Spotlight on Ken Clare

Ken, please tell us a bit about yourself.

I am 53 years old, and after a lifelong struggle with obesity I am still morbidly obese.

As far back as I can remember, weight has been an issue. My mother was obese and was always dieting. Worrying about my weight, she encouraged me to try to diet, though in the sixties I don’t think we were as enlightened as we are now.

I hated physical activity at school and felt shy and embarrassed about my body in an all-boys school. People gave me verbal abuse and bullied me

because of my weight. I don’t know about other countries in Europe, but men in the UK are usually reluctant to discuss their health or weight with one   other, which only heightened my isolation.

I left school as soon as I could and went to college to study to become a nurse. At 18 I went away to work and it was suggested that I work in mental health, as my large frame and height would be an asset.

My weight continued to increase I was promoted to a job that required less physical activity, but my food intake stayed the same or increased. I married, lost weight then gained it again in 12 months. My wife and I had a daughter who is now 24 years old. My weight just continued to rise. My doctor never mentioned this. I stopped using the scales when I was too heavy for my weight to be recorded. I was struggling with my mobility; had severe joint pains and could only walk for about 75metres.

Approaching the age of 40 in the year 2000, I decided to do something about this myself. At this time my weight was approximately 200kg. I was referred to a specialist weight management clinic. It was here for the first time I felt listened to and helped. This was a major turning point for me.

I jumped right into this course though I was the only man participating. I took part in physical activity. I went for Cognitive Behavioural Therapy. All this enthusiasm was unusual for me. I tried Orlistat, but the other two drugs available at the time were unsuitable for me.

At the end of two years I was referred to a surgeon and I underwent a gastric bypass. The effects were dramatic. In 12 months I lost 100kg. My mobility had improved and I was able to work out in the gym and even take part in 5K races.

Shortly after my operation I set up a charity (not for profit) called WLSinfo www.wlsinfo.org.uk

This has not been an easy journey but my life is 1000% better than it was. I have experienced a rocky road to my recovery; along the way I was diagnosed with bipolar, alcohol problems and a brain haemorrhage. But I am here and I am doing well today.

Just recently, I have been fortunate to be involved with another charity which obtained funding from our National Lottery, and we are running short courses for people who have had bariatric surgery to help them achieve better outcomes.

In the last 12 months I have been involved as a patient member on a national group looking at obesity treatment policies. It has been an interesting experience. I have learnt a lot about health economics.

I continue to be a qualified nurse and that helps me get involved with obesity and its treatment. I have attended the European Association for the Study of Obesity annual Congresses in both Liverpool and Sofia, where it was great to meet like minded people from across Europe. I hope we get further opportunities to meet and achieve more together through the Patient Council.

I love the internet and gadgets. I am an early adopter of new technology and I especially love Apple products. I am a keen photographer – you can see some of my pictures on my Facebook page https://www.facebook.com/pages/Ken-Clare-Photography/163039187153494

Where do you live?

I live in Liverpool, a large port city on the River Mersey in the North West of England. Most famous for the Beatles, we also have two football clubs, Liverpool and Everton. If anyone comes to visit, do let me know I will give you the tour.

Please tell us how you currently advocate for patients and hope to support people who experience obesity in the future. Do you have advice to share?

We are fortunate enough to have a National Health Service which is free for for all at the point of access and time of need. It is clear, however, that there are financially difficult times ahead and I have concerns obesity will be an area where cuts are made.

My advice is to be persistent – if a door is closed in your face – keep pushing. I believe unity and patient power are powerful forces that clinicians and politicians will find it hard to resist.