БФ "Открытые ладони" / CF Open Palms
Вторник, 17.10.2017, 03:33



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Cystic fibrosis (CF) is a genetic disease due to which sputum, pancreatic secretion, bile etc have hyperviscosity.
In patients with cystic fibrosis frequent and severe pulmonary infections develop due to sputum hyperviscosity and bad food digestion up to severe exhaustion develops due to pancreatic and liver disorders. Irreversible changes in lungs, pancreas, liver up to “refusal” of these organs gradually develop without persistent, regular and adequate therapy.
The very disease is incurable, although in developed countries by comprehensive therapy lifetime reaches 30 years, and lung transplantation (and even liver) gives 10-15 years more of life. There are over 800 patients with cystic fibrosis in Ukraine, of which total of about 17% breaks through 18 years old border.
Most patients without the required help (special medicinal products, medical equipment, supplemental nutrition) die from respiratory failure or characteristic complications (hepatic cirrhosis, diabetes, exhaustion etc).

The following is needed for bringing Ukrainians with diagnosis cystic fibrosis to European lifetime and life quality:

  • compressor inhalers of high quality. They are necessary for each patient from the very first day of making diagnosis. Each patient with cystic fibrosis requires inhalations on the average 2-5 times a day. In order to use medicinal products effectively (often expensive) inhalers of the proper class (Pari boy nebulizers) are required. In Ukraine they cost 3800 UAH, in Russia – 5960 RUB.
  • Pulmozyme is an unparalleled medicinal product able to thin viscous sputum in patients with cystic fibrosis. Its continuous use allows to slow down significantly lung breakdown, reduce frequency of pulmonary infections, prolong period of patient’s active life. Monthly course for a patient costs around 10 700 UAH, intake should be uninterrupted.
  • antibiotics and many supporting medicinal products which help to prevent some complications or fight against them. Antibiotics are an integral part of background therapy of every patient with cystic fibrosis.
  • special nutrition is required for many patients, especially children  in the period of active growth and also in the period of disease exacerbation, when patients can’t ingest sufficient amount of nutritional substances from usual food and often have critically low weight. Only German Calshake nutrition is available in Ukraine, it costs around 855 UAH in a month for each patient. There is also Skandishake, Skandical nutrition in the USA. Humana mit MCT nutrition is used for babies up to 2-3 years.
  • special vitamins (aquADEKs) – patients with cystic fibrosis digest badly some vitamins from food, so they need special vitamin products. Such vitamin complex costs around 250 UAH/month. They are sold only in the USA.
  • portative pulseoximeters of high quality (Nonin 9500 or 9590) are devices for control of degree of oxygen in blood. They are necessary for each patient. In Ukraine they cost around 6 000 UAH, in the USA – around $ 200.
  • oxygenic concentrators are devices allowing to disengage and supply pure oxygen from usual air to patient. They are required at the last stages of disease. Concentrators not only allow “serious” patients to stay at home and not in resuscitation department but significantly increase lifetime and improve quality of life of patients with cystic fibrosis. Being at home patient can preserve activity for longer, have better nutrition, have lower risk of getting dangerous healthcare acquired infection with oxygenic concentrator. It allows prolonging patient’s lifespan for three-five years at home. New stationary oxygenic concentrate costs 1280 EUR (at the current rate to UAH), pre-owned apparatus of high quality costs around 600 EUR.

Yes, it is impossible to heal people with cystic fibrosis. But there is a great difference between dying in resuscitation department as a 10 years old child or living till 40 years old surrounded by relatives and friends having an opportunity to study, work, hang out…
The difference is as long as life.

The following projects are valid within the program “Oxygen.ua”:

  • Project for change of inhalers for contemporary Pari Boy inhalers
  • "90 %" project – provision of CF patients and oxygen deprivation with pulseoximeters and oxygenic concentrators
  • "Vitamins” project – provision of newborn babies with CF up to the age of 4 and adults with prominent features of vitamin deficiency with special vitamins.
  • "+500" project – provision of CF patients with critically low weight with special nutrition.

Our program and its people under care can be supported according to the bank details of the fund (buttons of on-line payments are functioning).

 

Помочь легко!

 





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