Situation in Netherlands by Michiel Haverman, person with Duchenne

My name is Michiel Haverman. I am a Dutchman, but not the Flying Dutchman, a rolling Dutchman. I live nearby Amsterdam in a little village called Landsmeer. I am 21 years old.

I will talk about my experiences in Holland with a condition named Duchenne. And what I think is different with many other countries in Europe.

I was born at a hospital in the province city called Purmerend. My first couple of years there wasn't a big concern about me. Only that my development with walking, sitting up, etc was legging behind but that, the doctors said, will change. At my fifth year I went to a doctor who thought my differences with the other children was due to some malfunction of my brains. After a year or so I went to another doctor and he saw at first sight what kind of condition I had. They took a biopsy of my leg muscle and then they diagnosed Duchenne at my seventh year, in the year 1988.

This was of course a shock for the family. My parents got in to contact with the VSN, the Union of Muscular disorders of the Netherlands. The VSN is an active member of EAMDA. The VSN promote research, they help people to get in contact with each other. For example my parents go three times a year to a small meeting group to meet other parents who have Duchenne children. There they can talk and support each other. Also the VSN gives various kind of help and they have a website. There came a man from the VSN, who said what my future for me should look like. At that time children with Duchenne had a lifespan of 18 till 20 years.

Till the age of 9 I had big buggy to sit in for the big distances. Then at the age of 10 I begin to use an electric wheelchair.

In Holland you can get a wheelchair within six months, of course this if the indication is without doubt. This makes children more independent, they can go out and play with their friends and this makes life more enjoyable. At that time I was very pleased with my wheelchair because when I walked it was very tiresome and I fell a lot.

I had physiotherapy once a week at Wednesday. Here I had to walk or stand and stretch all my limbs otherwise they would get fixed.

When I was 12, I went to Heliomare, which is a very big organisation. It is a revalidation centre with also a school for disabled children. They have a primary school and a high school. I did the primary school at the regular school in my hometown. After the primary school I went to the high school at Heliomare. There they have smaller classrooms then usual so that the disabled children can get more attention and care. There are also revalidation doctors, physiotherapists, ergo therapists and social workers. So the disabled children and of course children with Duchenne have great care.

The revalidation doctors do many check-ups. In the revalidation centre Duchenne persons also get x-rays of the back every six months. If the back has a greater angle then 30 degrees then in most cases there will be a consideration: if the back must get iron pin in the back to stop the back from getting a great scoliosis. The organs, most of all the lungs, are getting less space because of a great scoliosis. Then breathing becomes harder to do and then you must rely earlier on respiration apparatus and you can get easier pneumonia.

The ergo therapist do many things to make life more easy. For example to help to request an electric wheelchair or a laptop if writing becomes more difficult to do. Because of the economic situation ten years ago was easier to get things from the Government then nowadays. At Heliomare the care is very great. At every province of the Netherlands there is a revalidation centre such as Heliomare.

Duchenne persons get many check-ups of the lungs. A good attention is taken to the fact of how much you can breathe in and out. The check-ups you get at the Centre of Home Respiration every six to one year in Utrecht. If you get headaches or you are tired and you have other complaints that has connection with a malfunction of the lungs you can get respiration apparatus. The doctor who is specialized at lung disorders talks first with patient who has Duchenne and if he decide to have a respiration apparatus, then the doctor talks with his parents. Then the patient gets first night respiration with a cap. At night breathing is more difficult.

In my case I got night respiration after 2 weeks in the hospital with an inflammation of the lungs. That happened in August 2001. So I have almost 1,5 year night respiration.

If you still have complaints with night respiration then you must get continuous breathing support. In most cases this happens with an operation of a canule or trachea. But nowadays there are people who have continuous breathing support with a big straw where the air comes through. You can eat or talk if you put the straw out of your mouth. This is very good development because with a canule the care of Duchenne becomes greater. But this development with the straw breathing support is in his early stage and I if you have much slime or you are not strong enough to get the slime away you must take a canule otherwise you cannot get the slime away. Since a year or so I have also a pair of bellows or as some people call it a ballooner. With the ballooner you get 2 or 3 pushes with air. This makes it easier to get slime away if you don't have a canule. Because if slime gets stuck in the lungs you can get pneumonia and that you must prevent at all costs.

We, persons with Duchenne in Holland, also get check-ups of the heart by the cardiologist. This is very good because the heart is of course the most important muscle of the body. Duchenne persons die most of the time of a malfunction of the heart. You get heart pills to help the heart beat easier. Duchenne persons in autumn get an injection against the flu.

There are also vast medical protocols in every big hospital how to treat a Duchenne patient and the protocols can be delivered to nurses, doctors, physiotherapist or any other medical specialist. So every Duchenne person can get the proper check-ups and treatment.

After school most of the Duchenne persons go to an Activity Centre. There they do things what they like most; many choose to do something with a personal computer. That is a great thing if you haven't got strong muscles. This pc was not there 10 years ago and then they had many less things to do. With the Internet, Duchenne persons can easily get and stay in contact and this also prevents them from isolation. And again makes life more enjoyable.

Some Duchene persons go studying after the high school. That is a big step and then you must go to a regular university or college what most of the time is less adapted for disabled people.

I did MAVO and then HAVO. With that diploma you can go to a college. I haven't done that. I work as volunteer for an Association of Amateur Theatre. I make a website for that organisation and other graphical work. I work 4 days a week. In my free time I am a lot online to chat and play games. I also play electric wheelchair hockey.

Now I shall say something about the differences between Holland and other countries, in my opinion.

I think a big difference is that Duchene persons in the Netherlands have many check-ups of the heart and the lungs. So in Holland if the indications are there, the doctors will intervene quickly. This makes them live longer. I don't know if many Duchene persons are living longer because of this, but it will make a difference.

Holland is also a rich country. This makes it more affordable to take care of people with Duchene. But there is also a system to make this happen. Good healthcare is I think the most important to make the life of Duchene easier and better.

Another great difference between Holland and other countries is the transportation. Disabled people can go to work, school and other places by special buses. Professional chauffeurs who are trained for the job drive the buses. Every one has the right of transportation in the Netherlands. This is paid by the health care.
We also got a kind of dole that makes disabled people more independent 700 euros each month if you live at home.

There are also special homes or apartments like Het Dorp, with specialized nurses. We have got also Focus houses where you can live single but you can call people to help you with all kind of things, such as cooking, washing, helping to bed. They take care of every Duchene person, not only the Duchene persons who have rich parents.