EASO Patient Council: May 2015

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.