Introduction
My name is Gabriela Sabolova and I live in the Slovak Republic in Central Europe. Twelve years ago, trained as a chemist, I worked in a laboratory. I felt this work best served my career. But my two daughters changed my life. Both of my daughters suffered from severe atopic eczema but I could not find a physician to help us.
After a period of desperation and anger, I searched for help in foreign scientific literature. I found that my daughters had all of the symptoms for a diagnosis of “milk proteins allergy” but this diagnosis was unknown in our country at that time. When I first eliminated milk and milk products in my children’s diet I was really afraid, but soon I could see that the eczema together with itching and scratching disappeared.
When I published an article about my experiences in a women’s magazine, some mothers contacted me because their children experienced the same symptoms. This started my volunteer work with children suffering from milk proteins allergy.
...no one took care of the nutritional needs... |
I started to study human nutrition and gradually spread my interest to diabetes, coeliac disease and malnutrition. Three years ago, the president of Slovak CF Club, Dr. Katarina Stepankova, contacted me. She told me about the 324 CF patients in the Slovak Republic and about the doctors, microbiologists, nurses, physiotherapists and psychologist involved in their medical care at three CF centres (Bratislava, Banska Bystrica and Kosice). Yet, no one took care of the nutritional needs of people suffering from cystic fibrosis.
Slovak CF Club
I accepted a proposal to collaborate with the Slovak CF Club and I started studying all the literature I could find. The theory was clear—CF patients needed high energy food full of vitamins and minerals—all of which needed to be easily digested. While it seems to be a simple task, in reality it was much more difficult. A majority of our CF patients have eating routines to prevent suffering from painful diarrhoea and cramps. It is very hard work to persuade them to try something else. They usually eat soups, rice, sauces, apples and some sweets. Only 25% of our CF patients are in a good shape while another 25% are suffering from malnutrition. The other 50% rest are somewhere in between. I was really very sad and I felt I needed help to change this situation.
In the autumn of 2002, professor Birgitta Strandvik, MD, PhD from the Queen Silvia Children’s Hospital in Götenborg, Sweden held two excellent lectures on nutrition at the Slovak CF conference in Bratislava. Her amiable and human attitude to CF medical care spoke right to my heart. I was sure that professor Strandvik knew the answers to all my questions.
CF Centre Sweden
Thanks to generous support of CFW, I accepted a kind invitation from professor Strandvik, to spend two weeks (from 7th to 21st March 2004) at the Cystic Fibrosis Centre at the Queen Silvia Children’s Hospital in Götenborg, Sweden. The CF centre in Götenborg is one of four Swedish CF centres and it treats about 150 CF patients from infancy to adulthood.
Although the main aim of my study was the nutrition management of CF patients, I am sure that the most valuable experience for me was that CF care in Götenborg is team care. All members – doctors, nurses, physiotherapists, dietician, psychologist and social worker join forces together for the best care of their patients. Every member of the CF team was ready to provide me with as much information as possible. I took part in regular weekly team meetings as well as on all discussions and therapies.
Nutrition
Dietician Ellen Karlge-Nilsson was willing to answer all my questions as I followed her work with CF patients. Ellen taught me how to evaluate nutrition questionnaires which are part of the annual control of all CF patients and I found this very valuable. Our face to face work with Slovak CF patients in the area of nutrition is not very successful. Ellen encouraged me and told me that it took several years to gain collaboration with CF patients in this field of care.
I was very happy to hear that Ellen recommended—to parents of CF children and to adult CF patients—the use of Nutridrinks (and similar drinks) only if it is impossible to eat normal food or in the case of infection. She also only encouraged the usage if the patient was travelling or if the patient was involved in longer engagements such as in school or at work. In Slovakia, all CF patients are prescribed Nutridrinks and it is recommended for daily use. Some mothers serve it to their children instead of meal and Ellen offered advice on how to fight against this usage.
Nutrition recommendations for Slovak CF patients remained the same for a long time: lots of cream, meat and fat cheese. Vitamins were supplemented in tablet form. So it was a pleasure for me to see that in Sweden, miscellaneous food is served to CF patients. I am very happy to have the chance to learn a lot about the nutrition management of CF patients.
EFA
I heard about essential fatty acids (EFA) deficiency in case of CF for the first time from professor Strandvik at the Slovak CF conference in 2002. Professor Strandvik explained to us that EFAs deficiency is connected with impaired growth and aggravation of pancreatic and lung function. After the conference, we tried to start a routine serum level of EFA’s determination but our first attempt failed because the Slovakian hospital lacked necessary equipment. In Götenborg I spent a lot of time in the laboratory that specialised in EFA’s determination. A very skilled chemist, Berit Holmgren, kindly answered my questions, taught me how to evaluate the results and gave me detailed methodology for EFA’s determination. Now we are prepared for second attempt. Slovak CF Club established a collaboration with a chemical laboratory aimed at estimating fatty acids and I believe this attempt will be successful.
PEP mask technique
The PEP mask technique had not been used in Slovakia but it is now thanks to two wonderful people. Mrs Ulrika Sterky Hannson, a member of the Swedish Cystic Fibrosis Association board, generously donated our first PEP mask. Physiotherapist Anna-Lena Lagerkvist, taught me how to use it. So we now use this new airway clearance technique.
Thanks to professor Strandvik, I had limitless opportunities during my stay to visit the hospital library and to copy all necessary documents. The result of my work there is four kilograms of papers and two books – a generous gift from professor Strandvik to our Slovak CF Club.
On the behalf of all Slovak CF patients, I thank Cystic Fibrosis Worldwide very much for the opportunity to gain a lot of experience, knowledge and encouragement from the staff at the Götenborg CF centre.
