2 juni 2006 : Opening address by the Governor-General of the Netherlands Antilles mr. F.M. d.l.S. Goedgedrag at the ‘1st Hepatology Symposium’

Distinguished guest speakers and guests, ladies and gentlemen,

It is a great honour to be invited to open this First Hepatology Symposium, which is organized by nashko in close cooperation with The Association of Liver Patients Netherlands Antilles and Aruba, Kokólode. I extend a special welcome to our distinguished speakers from abroad, all specialists at the Rotterdam Erasmus Medical Center. I thank you for your willingness to share your experience and knowledge with your Antillean colleagues. I know for a fact, that they will prove to be excellent students who might even teach you a thing or two. For some of you, this will be your first visit to our country. Although it looks like you have a full nashko-Kokólode-schedule, I hope you will find at least some time to discover our Dushi Kòrsou.

Ladies and gentlemen, after accepting the kind invitation to open this symposium, I realized there is not a single thing I could tell you about liver diseases, their causes and their treatment, that you – highly educated as you all are – do not already know. For a moment I feared this would turn into my shortest opening address ever. But then I took a closer look at this symposiums program and was pleased to learn about the Information Morning on Sunday. On that day you will shift your attention from mainly medical issues to laymen, such as myself. I applaud the initiative to provide information to both liver patients and the general public.

After its foundation in December 2004, Kokólode’s first objective was to organize this symposium. Now that this task is completed, in an excellent way, I would like to add, Kokólode has set itself another goal. Kokólode aims to increase the general knowledge about liver diseases. Although an estimated six thousand fellow countrymen have a disorder of the liver, they hardly ever seek publicity.

Why? Mainly because there are still a lot of prejudices against liver diseases and their patients. Many think that only people who are alcoholic, suffer from obesity, abuse drugs or are diabetic, are at risk.

You all know liver diseases are not that selective, but how do we explain that to the general public? How do we make them see that most of your patients are non-alcoholics that can be black or white, rich or poor, young or old? How do we fill in the gaps in the general knowledge of liver diseases? How do we make the public understand the difficulties your patients and their families face, when a patient suffers from a disease that is still incurable such as, for instance, primary sclerosing cholangitis (PCS)? How do we explain what it is like to be on the liver waiting list, knowing that someone has to die in order to safe your life?

I do not have an appropriate answer to all those questions. But I do believe that exchanging experiences and sharing patient stories, can be a way to connect. Not just to fellow patients, their families and friends, but also to the community at large. In order to prove my point, I will share a patient story with you.

This is the story of, let’s call him John. John is diagnosed with ulcerative colitis and primary sclerosing cholangitis (PSC) at the age of twenty-six (26). His symptoms persist at a stable level for years.

In October 2000, at the age of thirty-two (32), John is appointed judge in a District Court in the Netherlands. John, who is looking for a change and some adventure, sells his house and moves to Curaçao. Starting August 1st, 2005 he works at the Joint Court of Justice and is very happy doing so.

Within less than four months, John’s life changes dramatically. He shows signs of fatigue, itching and jaundice and these symptoms progress rapidly. You probably all know this means that his PSC – which has been in remise for over eleven (11) years – suddenly acts out. Tests show that there is a major blockage in the common bile duct. Since there are some signs of liver failure, John learns that there is a chance that a liver transplant may be indicated. There is hardly time to fully comprehend the situation, but it is safe to say that the sheer possibility of a liver transplant turns John’s world upside down.

Mid December 2005, John undergoes surgery in Holland. He returns to Curaçao with a twelve (12) centimeter stent (tube) in his bile duct. Things look good again and the thoughts of a liver transplant are carefully shut out. But within three weeks, the fatigue, the itching and the jaundice return. It turns out that the stent is clogged up, which is a major setback. Early February 2006, John’s physician at the St. Elisabeth Hospital (SEHOS) replaces the stent. Although this second stent functions properly at the time, John will be examined later this month in order to determine his fitness for a liver transplant. The examinations will be conducted by John’s physician in Enschede, in close cooperation with both his physician in Curaçao and the UMC Groningen. If they decide on a liver transplant in the near future, John has to move back to Holland, since hospitals in the Netherlands Antilles do not – at least not yet – perform this kind of surgery. 

Although the fear of a blocked up stent and the prospect of a liver transplant are constantly there, John tries to lead a normal life. He is supported by his family, friends and colleagues, without whom he would not have been able to pull it through. This is where my patient story ends. Apart from the name, it is all true. I know so well, because John’s wife is one of my associates.

John gave me permission to share his story with you, because he hopes it will dispel the prejudices against liver diseases and their patients. He realizes that he is very fortunate to have family and close friends by his side. For all those who aren’t so lucky: Kokólode intends to provide contact groups and aspires to evolve its website (kokolode.org) into a well known discussion forum. I express the wish that this symposium will prove to be the start of a liver diseases awareness campaign in the Netherlands Antilles.

Ladies and gentleman, in the coming days, you will be informed about the latest developments in the area of liver diseases and its treatment, in particular in the specific Antillean situation. I am confident that this symposium will be very instructive and informative. Not just for you, medical specialists, but for the general public as well.

I assured the organizing committee I would restrict myself to a ten minutes speech. I am afraid I broke that promise; therefore I should not keep you any longer.

But before I officially open this 1st Hepatology Symposium, I thank nashko and Kokólode for their joint organizing efforts.

Thank you.