News article September 2014















News article




This is a news article published in a hospital news paper in September 2014. I've made an effort at translating the text to English, see below. Probably not perfect English, but I've done my best! (Dutch readers can enlarge the screen)


Mother discovers 'medication' for son.

Samantha Schut de Zoete  - mom of CF patient Jaap (7) – discovered, as a result of hard work and a little luck, effective foodsupplements for his disease. Meanwhile ZonMW (a Dutch government agency) has awarded a grant for further research.

When Jaap was 2 years old, he was diagnosed with Cystic Fibrosis. From that moment on his mother started her search for a cure. Schut got on the internet and never left. “I will do everything to give my child a future”. She studied scientific publications and became a member of patient groups. She searched with great eye for detail and a strong memory, which served her well when 
trying to ‘connect the dots’. This is how she got on the trail of food supplements that can ameliorate the effects of CF. It turned out that among those, there were two effective ones, Genistein, a product derived from soy, and Curcumin, from the root of the Curcuma Longa plant. “I still had to search for the right dose. How much do you give a child that age? You don’t want to make any mistakes.”

Supersauce
Schut: “I gave Jaap what we called 'supersauce', which consisted of applesauce with the food supplements and vitamins mixed in. We told him he would grow strong and tall eating that orange applesauce, so he ate it. And he was doing so well; his symptoms disappeared. It was hard to tell he even had CF.”

Pediatrician Harm Tiddens noted the same thing. “His growth curve was not great initially as you see with many CF patients, but when Jaap was around three and a half years old, there was marked improvement. I knew his mother was clearly doing something very right and I was curious to hear her story.”

Tiddens could not avoid allocating double consultations to Schut. “We talked a lot about her findings and because Jaap was doing so well – his lung function was excellent and his MRI’s were great – I proposed a meeting with Dr. Hugo de Jonge, biochemist and CF researcher at the gastroenterology department, to ask if he could look into this further.

Medication
De Jonge: “Meanwhile in the US a medication had become available, Ivacaftor. We took biopsies from Jaap’s intestine and added Genistein, Curcumin and Ivacaftor to find out how these compounds worked together. We also asked researchers from the Wilhelmina Childrens Hospital in Utrecht to expand this research into ‘organoids’, little pieces of intestine grown from the biopsies. It turns out that all three compounds are effective, but when added at the same time, they show an enormous synergistic effect on the chloride channels (see insert), which led to normal function.”
“Very promising”, he continues, “But we are talking about just one patient here and that is not enough. The proposal for a clinical trial we submitted to ZonMW, led to a 300,000 euro grant. With this money we will compare the efficacy of both the food supplements and ivacaftor in a larger number of CF patients to find the most effective combination”. De Jonge adds that the trial only concerns a sub-group of CF patients, consisting of just 34 people in the Netherlands. “Of course we also hope to find a compound that is effective for the most common CF gene mutation”.

Even without the medication Ivacaftor, Jaap is still doing amazingly well. When he was diagnosed with CF, his sweat chloride test scored 118, now he is at 59. De Jonge: “It is an objective test that  determines the amount of salt. So Jaap is definitely moving in the right direction.

Insert:
What is CF?

Cystic Fibrosis is an inherited disease caused by mutations in the gene that produces a chloride transporting protein (CFTR) in the outer layer of our mucosal tissues. The defect in the CFTR protein leads to dry sticky mucus that causes serious airway infections and disorders in digestion.

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