28.02.-06.03.2011

Challenges and problems of families of mucoviscidosis patients are a leading topic of the 10th National Polish Mucoviscidosis Week that starts on 28th February under the motto “10 years of joint fight against mucoviscidosis”. The campaign was organized by Help Foundation for Mucoviscidosis Patients and their Families MATIO, with the support of Roche Polska.

Mucoviscidosis is a disease which requires daily rehabilitation and treatment, as well as regular administration of drugs and proper diet. Managing the right therapy in children is the task of parents, who do not accept the genetic disease of their child with resignation, but want to fight for a better tomorrow.  

Parents face huge challenges on the day their child is diagnosed with mucoviscidosis. Above all they have to get accustomed to the disease and accept it as a natural part of their new life. “When my doctor told me about Kuba’s disease, I didn’t know anything about mucoviscidosis. It took me several days before I understood what my child’s organism has to fight with every day. It would have been very difficult to take care of Kuba, if it weren’t for the precious advice of doctors and rehab specialists. Not only did I have a whole range of new duties – as any young mother, but also I had to deal with the baby’s physiotherapy and treatment. I had to turn from an accountant into a doctor, nurse, rehab specialist and diet expert overnight” – said Anna SÅ‚awianowska-Morawiec, mother of a 16-year-old Kuba who suffers from mucoviscidosis.

Due to comprehensive therapy, the majority of parents take the decision that one of them has to quit job, in order to fully devote themselves to a difficult care of a sick child. Carers face new challenges, with the most important one involving learning to carry out numerous physiotherapeutic procedures that facilitate the removal of thick secretion which is retained in the airways of a sick child. The basic procedure involves bronchi drainage, supported by patting and often combined with inhalations. Physiotherapy of mucoviscidosis patients is necessary at any age, and while in the case of babies and younger children there are no major problems with it, teenagers manifest the first traces of rebellion, characteristic for puberty. Parents have to find a way to motivate their children to take drugs regularly and undergo physiotherapeutic procedures. 

Another therapy element involves following specific nutritional principles and regular intake of high-calorie snacks which supply the organism with valuable nutritional elements. The majority of mucoviscidosis patients have an increased energy-demand, caused by extra effort put in breathing and fighting infections.

Both special diet, as well as equipment necessary for physiotherapeutic procedures is related with extra expenses, which are a big burden for a household budget of a family, where usually only one of the parents is working. Often the situation gets worse when the child grows up, as due to disease-related frequent visits at a hospital, employers often discriminated against chronic patients on the labour market.

10th National Polish Mucoviscidosis Week
A whole range of informational and educational activities were planned for the National Polish Mucoviscidosis Week (28.02-06.03.2011):

• 23 medical centres across Poland offer free-of-charge telephone consultations. For full list of centres participating in the action please visit www.mukowiscydoza.pl. Volunteers who provide information about the disease will be on duty 24/7 under telephone number of the Foundation (12) 292 31 80 and under an e-mail address: krakow@mukowiscydoza.pl
• The first 100 patients to call under 22 644 60 19 at GENOMED healthcare centre will have the possibility to carry out CFTR gene mutation testing (for details see www.genomed.pl)
• Posters and leaflets will be distributed at clinics, hospitals, art schools, as well at ELETAXI cabs and at all SMYK stores
• Training courses and educational workshops will be organized for the sick and their families, rehab specialists, nurses and midwifes, as well as for medicine students (for details see www.mukowiscydoza.pl)
• MATIO Foundation will issue a poetry volume by Joanna Jankowska who suffers from mucoviscidosis
• StanisÅ‚aw Sitka’s grant programmes will be launched for scientists and doctors who work in favour of persons suffering from mucoviscidosis
• Scholarship programmes for adult and teenage mucoviscidosis patients will be launched to help them develop their passions
• MATIO volunteers will be organizing charity concerts and collecting money
• The Polish  Post will issue an occasional card, poster and stamp devoted to the 10th National Polish Mucoviscidosis Week
• During Janusz Kulig’s and Marian Bublewicz’s memorial race it will be possible to submit bids to win a drive with one of the Polish racing champions; the funds will be used to support the activities of MATIO Foundation 
• Millward Brown SMG/KRC, the campaign’s partner, will carry out an opinion poll to check the knowledge of Poles about mucoviscidosis, and the results will be available on the campaign’s website

For detailed information please see a special campaign website under www.mukowiscydoza.pl

About the Foundation

Help Foundation for Mucoviscidosis Patients and their Families MATIO was founded in 1996. Its prime objective is to provide comprehensive help to children and adults suffering from this incurable disease, to their families, as well as to raise awareness among the general public about the disease. The Foundation cooperates with scientific centres and doctors from Poland and abroad, as well as with many organizations across the world. Apart from aid and awareness-raising activities, it organizes workshops and training courses for parents and medical personnel, medical and scientific conferences, internships abroad. It issues its own quarterly “Mukowiscydoza matio” addressed at the sick and at the medical milieu, and it runs a motivational program for the sick and a rental of modern rehab equipment. In the past the Foundation implemented several EU projects, it was the first Polish NGO to implement Leonardo da Vinci EU project in 2004. The Foundation supports patients as regards procuring drugs, equipment and nutrients, as well as runs free-of-charge subaccounts for patients.
The activities are implemented thanks to donations and 1% annual income tax transfers. The Foundation is a public utility entity.

MATIO Fundacja Pomocy Rodzinom i Chorym na MukowiscydozÄ™
ul. Celna 6,
30-507 Kraków,
tel/fax  (12) 292 31 80,
krakow@mukowiscydoza.pl
www.mukowiscydoza.pl
KRS 0000097900