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“Diagnose – to treat, treat – to?” 11th National Cystic Fibrosis Week (27 February – 04 March 2012)

The main theme of the 11th Polish National Cystic Fibrosisi Week, starting on February 27th, is ‘Challenges faced by young people with CF in their everyday lives’. . This year, the main motto will be “Diagnose – to treat, treat – to?”. The 11th edition of the campaign matches the celebration of the Rare Disease Day, as CF is a rare disease. The campaign is organised by the Foundation for help for People with Cystic Fibrosis and their Families MATIO. This event takes place under the Honorary patronage of of the First Lady of the Republic of Poland, Mrs Anna Komorowska, andthe Substantive Patronage of the Children’s Memorial Health Institute, Mother and Child Institute in Warsaw, and the Polish Cystic Fibrosis Foundation.

 

Thanks to the progress in medicine and physiotherapy, people with CF can live longer and build a family. According to estimate data from the MATIO Foundation, more than 30% of all diagnosed patients in Poland are older than 18. This fact is very important, as 20 years ago, children with CF did not even achieve school age. Today, thanks to screening and reference centres, many of themstudy and start working. They try to live a normal life despite the daily treatments and the need for systematic rehabilitation which is very complicated because of the binding healthcare system. 

The question raised in this year’s motto for the National CF Week is whether CF patients have the same opportunities in the society as healthy people. Studies carried out by Millward Brown SMG/KRC Institute indicate that during the last ten years, the awareness of the name of the disease in the society increased to 70%.  However, the knowledge about the course and effects of CF is still small, as patients suffering from the disease have the sense of social exclusion. Educational activities are addressed to various social and professional groups, in particular those that can impact on legislation. Adult working patients face absurd legal regulations when their health does not allow them to continue working. Despite long-term payment of full social insurance premiums, when they have to stop working, they only receive a small social pension, which does not correspond to the amounts paid as premiums. This means that the money earned by patients for years and paid for social insurance is simply lost. In some Western European countries, patients with chronic diseases can not only count on salaries from the employer, but also on an additional bonus from the state – a benefit which is a form of praising the fact that they take a job, and thus also contribute to the state’s budget.

A similar absurd  situations occurs when one of the family members does not work, as he/she has to take care for a sick child requiring 24/7 attendance.

“Patients with CF, despite the awareness of the clearly marked end of life, do not surrender. More and more of them wish to live an active life, they want to leave some heritage. It is sad that as a society we cannot appreciate their actions, knowing that working requires much more spirit from them than efforts of any healthy person,” says Paweł Wójtowicz, Chair of MATIO Foundation.

 

Specialist home care, or MUCO COMPLEX MATIO team

In Western European countries, there is a system of home care for patients with chronic diseases. In Poland, such a system does not function, despite the fact that it would be a tangible benefit to the state’s budget. It is estimated that replacement of hospitalisation of one patient with home care would safe between1 and 3.8 M PLN per year.  The alternative is formed by visiting teams going to the patient’s home.

During the National CF Week, MATIO Foundation will inaugurate two further MUCO COMPLEX MATIO visiting teams that will start working in the Mazowsze, Wielkopolska and Lubuskie regions. For over a year, such teams have been operating in the Małopolska, Świętokrzyskie, and Podkarpacie regions, supporting many patients and their families in everyday struggle against the disease. The teams allow for home visits of a group of qualified staff: nurse, dietician, psychologist, physical therapist, social worker. This system can help parents of sick children and adult patients to limit the number of visits and time spent queuing for visits at five specialists.

The team spends several hours with the family, talking to the parents about their child’s disease. Team members explain to the parents how the child should be treated, rehabilitated, what diet should be applied. Visiting teams are a perfect alternative for the numerous visits at hospitals, where CF patients are exposed to infections that increase the inflammation in their lungs, says Dr. Zuzanna Kurtyka from St. Louis Regional Specialist Hospital in Krakow, who supervises the operation of the teams.

The MUCO COMPLEX MATIO visiting teams have been established on the initiative of the MATIO Foundation and are the only teams of this kind in Poland. They are financed exclusively from the Foundation’s own sources coming from 1% of income tax donated to it. They have been created to follow the example of teams operating in many European countries based on experience gathered by MATIO foundation workers during training in the UK. Fuel for the MUCO COMPLEX MATIO visiting team is sponsored by the ORLEN-DAR SERCA Foundation.

 

 

 

The Rare Disease Day

The 11th National CF Week is part of worldwide Rare Disease Day, celebrated on 29 February. MATIO Foundation is a member of EURORDIS, the European federation of  rare disease patient organisations, which organises the Rare Disease Day.

 

11th National Cystic Fibrosis Week

During the National CF Week (27 February – 4 March 2012), organised together with long-term partner, Roche Poland, a number of informative-educational activities have been planned:

  • In 23 medical centres across Poland, it will be possible to benefit from free-of-charge medical consultations on the phone. Full list of centres taking part in the campaign is present at the website: www.mukowiscydoza.pl Between 9.00 AM and 9.00 PM, at MATIO Foundation, phone will be available: (12) 292 31 80, and e-mail address:  krakow@mukowiscydoza.pl, where it will be possible to obtain information.
  • Like last year, thanks to cooperation with NZOZ GENOMED, stakeholders will be able to carry out a genetic test on the CFTR gene. For the first 70 people who apply by phone (022 644 60 19) during the 11th National CF Week, the genetic test will be performed FREE OF CHARGE. Details available at: www.mukowiscydoza.pl.
  • Thanks to long-term cooperation with the Polish Post Office, an occasional postcard and date stamp will be issued this year. This is a special occasion for collectors, as this is a limited edition.
  • Across Poland, there will be several thousand posters and information brochures, as well as free-of-charge newsletter "MATIO. We live with CF” to explain the nature of the disease and the scope of aid needed for patients.
  • There will be public charity collections, charity concerts and press conferences, including:

      - 24 February at 9.00 PM – charity concert by MEZO in Poznań for the benefit of 1.5-year-old   
       Ania who suffers from CF.

            -29 February at 3.00 PM – conference “Living with CF” at Collegium Anatomicum
             of the Medical University in Wrocław, address: ul. Chałubińskiego 6a with the participation of doctors 
             and patients with CF – free entry.

            -29 February at 11.00 AM – Water Palace in Łazienki, Warsaw, conference
            “Together we are strong” on rare diseases.

            - 02 March at 3.00 PM Kraków, lecture room at ul. Łazarza 16 – conference
            addressed to students in medicine and education.

            - 03 and 04 March 12.00 – 6.00 PM Galeria Kazimierz in Krakow – educational 
             campaign “You will understand while breathing” – free-of-charge spirometric tests 
             and charity campaign for beneficiaries of MATIO Foundation.

            -03 March 12.00 – 6.00 PM  Galeria Turzyn in Szczecin – charity campaign
             “Dolina Mukolinków” – a number of tests and medical consultations, singing,
             instrument and dancing shows, martial arts shows, exhibition of hand-made jewellery
             by Karolina suffering from CF, and charity campaign for beneficiaries of MATIO Foundation from

            Zachodniopomorskie Region.
 

For detailed information please visit our special campaign site:  www.mukowiscydoza.pl

 

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