The following is a translation of a newspaper article about Bram Platel and his non-profit ‘Stichting MS in beeld’. The original article can be found here.
Thousands of MS patients watch the videos of Bram Platel from Boxtel, who also has MS. Just like his father and sister. “Thank you very much for your clear explanation”
BOXTEL – Ten years ago, Bram Platel was diagnosed with MS. His father, Theo, and sister, Eefke, had the same disease before. His mother, Ineke, has a rare form of muscular dystrophy. But they don’t get discouraged. Tens of thousands of MS patients worldwide better understand their disease thanks to his explainer videos.
Author: Noor Reigersman
August 3, 2023
Who is Dr. Bram Platel?
A scientist and a true researcher. Someone who can explain complicated material crystal clear. Moreover humorous, friendly, and driven. He uses all of this to help his fellow patients with ‘Stichting MS in beeld’ (MS in the picture Foundation), which has been in existence for five years now.
You were two years old when your father fell ill with MS.
“Yes, and that was the reality for us. It’s about how you deal with your limitations. My parents can’t do many things, but they still do a lot. You learn a lot from that as a child. I sometimes hear people say, “If I end up in a wheelchair, I might as well die.” But I don’t feel that way at all. It is also often said: “Health is the most important thing there is.” You can also see it differently: how do you deal with it if you are not healthy? If you can participate in normal life, then it’s good. So your attitude is very important. If my parents had withdrawn in depression, it would have been very different for my sister Eefke and me. We really had a perfect childhood. And as a family, we understand each other very well. We all know what it means to be tired. My wife is very active. She can’t quite understand that, and that is understandable. You can only know how it feels if you are sick yourself.”
In addition to MS, you also developed a brain tumor.
“In 2014 I was diagnosed with MS and after that, I quickly got worse. In 2016 I had to stop my regular job. A year later I was diagnosed with a brain tumor. I could hardly move my head, I was so dizzy. It was actually a happy accident: I received a treatment not yet given to MS patients in the Netherlands at the time: stem cell therapy (HSCT) and chemotherapy. This resets the immune system, allowing the MS to come to a halt. Some things have improved since then, such as talking and cycling.”
He shows a picture of himself, lying in a hospital bed, on an IV. His son Thomas (11) enters and watches. “You’re smiling in that picture, Daddy. You always smile, even when you had a tumor.” His 9-year-old brother Nils joins them. “What is a tumor?” Bram patiently explains. “We are very open with the children and they are very interested. They also learn from it. Suppose they themselves or others around them fall ill, then they will understand it more. They also find it normal that their grandmother is in a wheelchair.”
Where did the idea for MS in the picture come from?
“Initially, I mainly wanted to learn about the stem cell transplant. After a while, I thought: I’m just doing this for myself now, but many other people also have MS. Then I decided to start explaining to others. First on a small scale and then via videos on the internet to reach more people.”
In YouTube videos, he makes complicated scientific material accessible to his fellow patients in a crystal clear manner. “As a biomedical engineer with a Ph.D., you work with doctors and technicians. Both groups think very differently and then you as an intermediary must ’translate’ back and forth. So that’s what I’m used to doing.”
He takes out his laptop and shows a video. “It’s a lot of fun to do and I’ve always wanted to help people. I hope to reach everyone.” He chuckles. “When we were recently on the train in Germany, I was recognized. ‘Are you Bram Platel? I recognize you from the videos. Fortunately, neurologists are now also pointing out the existence of MS to their patients.”
Is MS in Beeld a gap in the ‘market’?
He smiles for a moment. “Yes, because most sites contain concise and simplified information and we do it extensively and not simplified. I do a hundred hours of preliminary research for every twenty-minute video. This allows patients to make well-considered choices and ask targeted questions to their neurologist. Doctors have little time for their patients and are not always aware of the latest treatments and insights. In the last seven years, developments have occurred at lightning speed and the need for information is great. The site has been viewed 74,567 times in five years, a total of 5,400 hours. So many people have never listened to me in my life, haha.”
He scrolls down to find comments from grateful patients: “Much better than any website I’ve read” and “Thanks so much for your clear explanation. Gives me a grip on the consideration I have to make.” He beams.
You no longer live in the Netherlands.
“That’s right, we are now on vacation and staying with my parents in Boxtel. We have been living in Manila for four years, close to my parents-in-law. If I hadn’t had stem cell therapy and chemotherapy, we wouldn’t have been able to move. The medicines there cost about ten thousand euros a year and you must pay for them yourself. Thanks to this treatment, I no longer need medication.”
And the costs he incurs for ‘Stichting MS in beeld’? “I pay most of it out of my own pocket. I am very happy when people donate something. But I’m shy to ask outright.”