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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