A high rate of undiagnosed patients and even a delay of several years in the diagnosis of the disease are the main problems affecting people with primary immunodeficiencies (PIDs) in Poland. The campaign "Immunity can be shared. How can I help?" aims to raise public awareness of NSAIDs and plasma as a priceless gift that most of us can share with those in need.
The campaign's ambassador and youngest Honorary National Consultant for Everyday Living with OSA and Honorary President of the association "Immunoprotect" is 7-year-old Kaja, who talks about her life with OSA as follows: Thanks to the doctor's early diagnosis, I take immunoglobulins and can do what other children do. I go to English after school and have volleyball training twice a week. I've also recently started taking classes at the Children's Polytechnic of Swietokrzyskie. I ride my bike, scooter and play with my cat Nela.
Primary immunodeficiencies are a group of disorders caused by a malfunction of the immune system or a lack of its ability to fight infections. NSAIDs can be diagnosed at any age. It is estimated that approximately 20 000 people suffer from NSAIDs in Poland, and only 4000-5000 cases have been detected so far.
Early diagnosis and implementation of appropriate treatment is the key to avoiding severe, life-threatening infections or irreversible organ changes, and to maintaining the current lifestyle. The list of warning signs of primary immunodeficiencies is quite clearly defined in both children and adults.
Most often, patients need regular supplementation of antibody deficiencies, i.e. so-called immunoglobulin replacement therapy (IGRT, or Immunoglobulin Replacement Therapy). Such treatment generally lasts a lifetime. Replacement therapy products are derived from blood plasma, the donor of which is a healthy person.
The campaign 'Immunity can be shared. How can I help?", with the Institute for Patients' Rights and Health Education as a partner, is the Immunoprotect Association for people with immunodeficiencies. The official launch of the activities took place during World Primary Immunodeficiency Week falling on 22-29 April 2022.
Educational materials such as a film and infographics on the warning signs of NSAIDs were prepared for the campaign. In addition, a special information zone on campaign activities was created on www.madraopieka.pl, a compendium of knowledge about primary immunodeficiencies.
These activities are supported by medical experts in clinical immunology, family medicine, paediatrics and patient organisations and, above all, by ambassadors, i.e. people with primary immunodeficiencies, as well as their relatives, who want to support and motivate others through their own experiences.
Campaign partners also include: National Forum for Rare Disease Therapeutics - ORPHAN and the Dreaming of Resilience Foundation. Takeda is a patron of the campaign.
The video with Kaja can be viewed here:
https://madraopieka.pl/kampanie/
