EASO Patient Council: February 2015
Please tell us who you are:
My name is Björn Brusgatis.
I’m 36 years old and married to my wife Daniela. After losing our house due to unemployment and illness, we moved in with Daniela’s family but we have recently moved into a rental where we live on our own.
For many years I worked as a salesman for shipping supplies at the Kiel canal, which is where I got to know my wife. After the company closed I went to work for an Apple partner, where I went straight into massive obesity and ended up burned out. After having been unable to work for more than three years, I have been back in employment for one year, working full time in public service.
Tell us about your county and where you live:
I live in Kiel which is located in the very north of Germany. I was born in Hagen, North Rhine- Westphalia, but in my early years my family moved to Kiel because I was suffering from croup and breathing the sea air was easier and made my life much better.
Please share some of your favourite things (activities, hobbies, interests):
I like to play tuba and play in a trombone choir, which I have been doing now for over 25 years. The choir has become my second family and is a big part of my life. Also, I am a movie maniac and love to go to the cinema as often as possible! I also enjoy listening to music.
Can you tell us what your experience of obesity has been?:
In my memories I always have been obese, even as a child. I literally used to live on a diet – over and over I remember being told to eat less and move more. As a teenager around 1990 I was earning my own little salary from a newspaper route and I spent my earnings secretly buying and eating chips and cola. Earning more money in an apprenticeship (about 1994) led to spending even more on snacks. But due to the amount of physical movement in my job, I just became very stout, not massively obese. In 2002 at the time of my marriage, I was about 140 kg and 2,05 meters of height, and my weight was slowly increasing.
Upon losing my job in 2005, I continued eating as before. Without any movement to compensate I grew bigger and bigger, eventually ending up weighing about 240 kg. Today I realise that this was my first time suffering with depression. I managed to lose weight and at about 180 kg in 2006 I was employed by an Apple partner, promising to continue losing weight.
But as an effect of the stress in the IT sector, and also my sedentary and difficult work environment, (I was bullied by my boss), my weight went back up, and I became even heavier than before. I was heading straight toward burn-out.
In 2010 I broke my knee and due to my massive weight and in my difficult condition there was no chance for me to be operated upon. My knee grew back together without any treatment and I developed very bad arthritis. I was nearly unable to move, but I could eat. That was when I was dismissed from work and ended up taking sick pay.
Reaching a weight of more than 250 kg in December 2010, my scale was unable to show my accurate weight anymore. At this point I made my way to the hospital in Kiel for bariatric surgery. My BMI was over 60, so I was told I would get the surgery without having to request reimbursement from health insurance because of state s3 guidelines. At the same time the surgeon told me he would not operate on me until I became more fit and lost some weight to reduce the risk of the surgery. At my largest size, I reached a weight of 318 kg, boosting my BMI to over 75.
It took several months for me to lose weight, even though I was guided by medical professionals in a long term VLCD (Very Low Calorie Diet). I managed to reduce my weight to 273,5 kg by the day of surgery. Even so, the equipment at the hospital was an issue; the operating table wasn’t stable enough to carry my weight. They had to purchase and build a new one in order to accommodate me and perform the surgery. That left me with a sort of perverse infamy, having “my own” operating table and for a long time, being the biggest patient ever operated upon in Kiel.
On the 3rd of March in 2012, I got my gastric sleeve surgery and In March 2013 I was operated on again because due to my massive weight loss, I had a great excess of loose abdominal skin, rendering me again unable to move. Now, almost three years later, I weigh 154 kg, making me in effect still obese and leaving some 24 additional kilos to lose to reach my goal of about 130 kilos. I’m on my way and without stressing or pushing myself I’m confident I will reach this goal.
Since my surgery, I‘ve already gained back so much quality of life and I’m having the time of my life!
Your reflection on the ECO2014 and hopes for the ECO2015?
Coming to Sofia was a major experience for me! This was my first time travelling by plane; previously I traveled only by car so I could be sure to fit in the seat and ensure I had more control of things – in fact, I didn’t really travel at all.
But the greatest part of the experience was meeting so many patients from other countries across Europe and having an opportunity and a forum to exchange our experiences. It was reaffirming to see and spend time with all the other patients and hear their own personal stories and experiences. I learned a lot!
I learned at the Patient Council Summit at the ECO 2014 that here in Germany we still have a long way to go in treatment of obesity. But at the same time, I came to realise that there are other countries in Europe that are far behind where we are in terms of developing systems for reaching patients and providing satisfactory treatments. Some countries are just getting started.
It was very gratifying to experience the respect shown to the Patient Council from all the members of EASO. I believe there is an unrivalled capability within the Council to provide stakeholders of obesity treatment and science with practical experience on the work they do from the patient experience perspective.
I hope at the EC2015 we will find a few but important goals for the Council to work on and that stakeholders will take the opportunity to communicate with and learn from us.
How do you currently advocate for patients and hope to advocate for patients in the future, Björn?:
For more than three years I have been working with several support groups for people with obesity. For many years there was no support group for people in Kiel other than in Schleswig-Holstein, which meant meetings had nearly 100 participants. We decided to establish a foundation in order to help obese people and their relatives find their way through treatment for their chronic disease. Today I am the vice chairman of Adiposa e.V. (www.adiposa.de or fb.com/adiposa.ev), a state association for support groups on obesity in Schleswig-Holstein and am running a counseling center for obese people staffed only by volunteers who are affected by obesity themselves, making it a unique project in Germany.
I hope in the future there will be more counselling centres for patients affected by obesity, helping them to find suitable treatment solutions and supporting them however they choose to manage their condition, whether through more conventional therapies, novel approaches or with bariatric surgery.
Also I’m looking forward the day when obesity will be considered a chronic disease like cancer or diabetes already are. In Germany, obesity is by law just a weight, and as a patient you can’t find proper treatment without extraordinary effort and embarrassment.
So let’s all work together on our goals to reach a state of respectful and proper treatment for people affected by obesity!