I can finally grow! MCT - my chance for normality
I'm Paul, a 2.5-year-old from the Stuttgart region. I belong to a unique group of about ten children in Germany who share something very special – we have a rare condition related to the KIF11 gene.
What is KIF11
KIF11? Never heard of it? Let me explain: I have a mutation on the KIF11 gene. I was born with primary lymphoedema in both feet. My parents soon discovered that I also needed glasses because I am very short-sighted. Some KIF11 children are already born blind or nearly blind. The limitations of the eyes and the lymphatic system are typical symptoms, along with a small head. When I was one year old, I started to feel sick more and more often and put on weight more and more heavily. Because of the rarity, even doctors often don't really know what to do.
Fortunately, I was quickly diagnosed with intestinal lymphangiectasia with protein loss (often called Waldmann syndrome) - a very rare fat utilisation disorder. For my parents, this was another complete change in everyday life.
For me, the MCT diet means that I have the chance to develop properly and later be able to lead as normal and independent a life as possible.
Dieta Chetogenica: "Aiuto, come lo dico alla mia famiglia?"
Con l'inizio della dieta chetogenica, le sue condizioni sono molto migliorate così come la voglia di uscire. Al suo cambiamento le persone che le stanno vicino hanno reagito in modi molto diversi: dall'interesse al rifiuto o addirittura agli insulti.All'inizio questo cambiamento è difficile anche per la sua famiglia. Nell'articolo, Susanne ci racconta come ha reagito in queste situazione e come le affronta oggi.
Starting the Keto Diet: One Step at a Time
When you receive a diagnosis of a rare disease for which there is no medicine to make it disappear, you feel like you're locked in a dark room. But when you're told that there's a therapy that can mitigate the effects of the disease, that's when the light returns...
Nothing is impossible
There are so many things we would like to share about the ketogenic diet. Monica has been on this diet since 2015, and much has changed - both in terms of meal preparation with new products on the market and in managing everyday life or special occasions. Monica has always been a cheerful and positive person.