What is PKU?
Children with phenylketonuria suffer from a rare, hereditary genetic disease, the heritability of which is carried in the genes of every fiftieth person in Hungary. The disease is associated with a metabolic disorder, as a result of which the child’s body is unable to properly break down the protein consumed during meals. Thus, one of its components – phenylalanine, which gives the disease its name – accumulates as a poison in your blood and attacks your vital organs and nervous system.
Babies and young children are most at risk, as the disease can cause irreversible damage to their development, but experience shows that a certain amount of damage can be caused by accumulated phenylalanine at any age.
There is only one way to avoid this:
the person affected by PKU cannot eat normal/high protein foods (e.g. meat, eggs, dairy products, cereals, etc.). Only water, sugar and fat are the foods that you can eat unlimitedly at any time!
The life of a dieter with phenylketonuria is eternal resignation. People with PKU can’t eat the lunch prepared in the kindergarten, can’t taste the food cooked on the campfire, can’t get a hamburger, can’t pay for the school canteen, and the romantic dinner of adolescence can only last until the salad. He is forced to eat a low-protein diet, mainly based on fruits, vegetables, special pasta and low-protein foods.
And you have to supplement your daily nutritional needs with a lifelong formula. In the meantime, the dieters are under constant medical and health supervision, and the phenylalanine level of the blood is controlled by continuous fingertip blood sampling from infancy throughout their lives. Fortunately, with a well-observed, consistent diet, the serious consequences of the disease can be avoided!
Our history (1990-2021)
October 27, 1990
For others, it’s a memorable news day because of the infamous “taxi strike”, and for us, it’s because something started here, a long journey that later became an inseparable part of our lives…
The beginning of a new journey
Parents – some arriving by car, some by train – made their way to the location where they were called. They knew each other, they had already met at “parent meetings” called by the center in connection with their child’s illness, but now they felt that this was going to be something different… it was something special, the creation of something new that “Aunt Csilla” called for, so we had to go!
“Aunt Csilla”
Before the history of the foundation of the association, you need to get to know “Aunt Csilla”. Unfortunately, we can only present his magical personality in writing, because fate took this wonderful MAN with an angelic smile, always ready to do something, from us at an early age.
The name of Dr. Csilla Somogyi is known to many, many of us knew her personally, the new ones are only from memories and old anecdotes. He was a chemical engineer at the care center in Budapest, but he always regarded any PKU patient as his second child.
At the suggestion of the professional community of the Buda Children’s Hospital, dr. Csilla Somogyi (1947-2010) was posthumously awarded the Children’s Award. (more)
The big “PKU ship”
A handful of teams of parents raising children with PKU went to war under the “captaincy” of Aunt Csilla and Dr. Csilla Somogyi. István Varga was elected as the first officer, and István Farsang as the second officer. This is how the triumvirate came together, “Aunt Csilla and the Istváns”, who steered that particular ship for many decades… they took more and more steps to achieve the jointly set goals. Everyone was in place. Everyone worked for the set goals. Everyone wanted to help the other. Everyone was constantly watching, looking for ways to be as efficient as possible, to work for common success. Sometimes we went through stormy waters, where the mast broke, the sail was torn, but even then everyone persevered, put themselves out there, and helped.
In the meantime, the first officer, the second officer, and the crew were changing, but the ship was moving forward, in one direction, we knew the goals, and we were moving from side to side. The ship got bigger and bigger, more and more people traveled with us and the wind threw bigger and bigger tasks towards us. In the meantime – after the loss of our captain – we boarded the ship with a new crew, where the common direction had to be determined for the first time, and the wind directions were not favorable for the trip. First, we had to straighten the course towards the new port…
Here we are now… Out on the open water. In a bigger headwind and with a smaller boat than ever before. And yet, we were shocked: “Oh my god, how big this ship is!”! We need to get to know each other (again), we need to untangle the threads of our relationships, we need to find out about the directions, how I can help the “travel”, what events I need to participate in in order to be a REAL part of it. of that ship and (again) to be a sailor, sailor, maybe even captain – and my child to be an active part – of the journey. I invite you to this!
Let’s fill the big ship! Let’s get into the next season with a ship that is more beautiful, bigger, faster, brighter and life on board is better than ever!
The presidents of the Hungarian PKU Association from the beginning to the present day:
Our projects and works:
- dietary product support
- baking studios, thematic workshops, educational meetings,
- summer lifestyle camps
- thematic camps (for small children, women about to become pregnant)
- Dr. Lajos Szabó scholarship program
- Development of the donation proposal for Dr. Csilla Somogyi Award
- support of publications, events, information materials,
- food subsidies, food donation packages
- Christmas, children’s day programs, meetings
- participation in Ritka days, ESPKU’s annual conference, online meetings, forums
- continuous consultation and contact with our partners, as well as with the organization of the Foundation for Phenylketonuria Children
- continuous information and communication with and for members
- exploiting, organizing and researching other unlisted opportunities that arise during the year.
We are happy to say that our Association
- is a member of the National Association of Rare Diseases, so we participate in various programs (Rare Disease Week is currently taking place),
- part of the European PKU Association, with which we jointly participate in EU Parliamentary forums,
- member of the Live Unlimited with PKU international campaign, in the framework of which you will receive the latest information about PKU at first hand
so we can offer even more prepared help to those who come to us.
