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: 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.

Europe must look to tackle obesity ‘across all EU policies’, says Borg

The Maltese official was addressing a Parliament Magazine roundtable discussion co-organised with Covidien, where he highlighted that “over half of European adults are overweight or obese”, adding that this has “almost become the norm”.

As the event’s keynote speaker on Wednesday, he stressed the problems related to obesity are “reversible”, underlining that, “If we said ‘nothing can be done’ then the battle would be over before it began”.

Read the full article.

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