Is it useful for people who suffer from hemochromatosis to adjust their diet? This was the question members of the Dutch Society of Hemochromatosis lay before the Science Shop of Wageningen University & Research. The research that followed led to specific recommendations. “Patients can now make informed choices about whether or not to modify their diet.”
In 1995 Philip de Sterke’s mother died due to hemochromatosis, a genetic disorder also known as iron overload. “In my mother’s case, the doctors took a long time to discover the cause. The disease was virtually unknown to doctors at that time. When, in 1993, the correct diagnosis was made, her body had been severely poisoned.”
When someone suffers from hemochromatosis, their body produces too much iron due to a genetic flaw. The iron accumulates in the body and causes a range of symptoms, like fatigue, joint pain and – in severe cases – diabetes and liver cirrhosis. Physicians today have gone back to using a treatment that surgeons in the Middle Ages used to treat unknown illnesses: phlebotomy.
“By tapping half a litre of blood, the blood loses a lot or iron,” explains De Sterke. “The body then makes new red blood cells with the help of iron that has accumulated in, for example, the liver. According to the doctors, this treatment is more effective than the use of pills which can have unpleasant side effects.”
De Sterke does not suffer from the disease, but because his mother did, he went in search of more information on hemochromatosis. “I began this search in 1993. At first I couldn’t find a lot of information. Hemochromatosis is not a disease that gets a lot of research funding.”
De Sterke was curious about the role that nutrition played. Intrigued by American research about the added iron to Kellogg’s cereal, he got into contact with Wageningen University & Research’s Science Shop. “I had just received a newsletter from the Science Shop in which I read that this organisation performs scientific research for foundations, action groups, and similar organisations with limited budgets. The Science Shop was willing to cooperate with us.”
The research question became: What nutritional advice can we give hemochromatosis patients? Nutritionist Gerdien van Doorn went in search of answers, starting with literature study and interviews with experts. Project manager was Irene Gosselink. According to De Sterke it is thanks to her that the research programme was actually completed: “Some board members believed that dietary advice should only be given by medical professionals and not our foundation. I think we can give advice as long as we are clear on the role we play. Together with another board member we left the foundation. Irene Gosselink was persistent and indicated that the Science Shop was still willing to do further research. Together with two patients, I became contractor of the research.”
The research report was completed in September of 2011. In the report Gerdien van Doorn gives concrete dietary advice that is based on scientific research. Hemochromatosis patients are advised not to eat red meat or organs and not to drink alcohol. It is better to eat fruit and vitamin C filled drinks between meals. And although there was no concrete evidence that indicated that iron enriched products had a negative effect on the levels of iron in the body, people were still advised against consuming them on the basis of ‘rational objections’.
Van Doorn concluded that by modifying ones diet, a hemochromatosis patient could need one or two phlebotomy treatments less per year. But she does stress that this highly dependent on the individual patient.
De Sterke is satisfied with the report’s recommendations and conclusions. “The report indicates that patients can make an informed choice on whether or not they want to modify their diet. What I also appreciate is that the Science Shop rewrote the articles in layman terms that could be published in magazines for patients, making the information accessible to them. The Science Shop also paid for translating the report into English, and I was able to send it to several patient associations all over the world.”
Just as important, according to De Sterk, is that the dietary advice has been added to the book Informatorium voor voeding en diëtiek so that the information also reaches medical practitioners, greatly improving the treatment of hemochromatosis patients.
De Sterke is very satisfied about the collaboration with the Science Shop: “And not just because I am glad that the research resulted in concrete advice. I found Irene Gosselink’s commitment admirable. When a part of the board wanted to road block the research she didn’t give up. And during the entire process she was always available and ready to support us.
“I can advise any patient association with a limited budget and thinking of doing research to contact the Science Shop and make use of the possibility to do research with them. But remember, it is not a one-way street: you have to be just as committed to the project and willing spend time and energy.”