7 September is World Duchenne Muscular Dystrophy Awareness Day. The annual September celebration is an opportunity for Duchenne muscular dystrophy (DMD) sufferers and their families to draw public attention to their problems and needs, and to prove that the disease takes away the boys' fitness, but not their dreams. And while the symbol of the day is a positive red balloon, the challenges faced by DMD patients and their loved ones are real, serious and multidimensional.
This year's celebrations included Baranovski - musician, Polish singer, composer, songwriter and pianist, a four-time Fryderyk Award-nominated artist - who played a special concert especially for the boys suffering from DMD and their loved ones, as well as everyone involved in treating this extremely difficult disease and helping patients. The recording will be broadcast on 7 September 2020 at 18:00 on the Parent Project Muscular Dystrophy Foundation's Facebook page at: www.facebook.com/fundacja.ppmd. Actress Grażyna Wolszczak, athlete Tomasz Majewski, actress Marta and Piotr Jankowski and actor and singer Robert Janowski were also involved in the event as a gesture of solidarity with those suffering from DMD.
World Duchenne Muscular Dystrophy Awareness Day
The Parent Project Muscular Dystrophy Foundation, which brings together DMD patients and their families, has planned a number of events to build awareness of Duchenne muscular dystrophy. The activities, which are local and national in nature, reach a variety of audiences, including healthcare decision-makers in Poland.
In addition to the concert by the popular musician, other activities in the public space are also intended to remind people of DMD. On 7 September, several major buildings in various cities in Poland will light up in red, referring to the colours of the symbol of Duchenne disease - the red balloon. The campaign is supported by: PGE Narodowy and IMMOFINANZ, owner of the Warsaw Spire office building, which will display commemorative slogans on their facades on that day, as well as the Branickich Palace in Białystok, the Podlasie Opera and Philharmonic - European Centre for the Arts, the "Spodek" Sports and Performance Hall in Katowice and the Imperial Business Center in Krakow, which will be illuminated on that day as a sign of solidarity with DMD patients and their families.
Duchenne disease, the possibilities offered by modern medicine and their availability, as well as comprehensive care for patients with DMD will also be discussed during a meeting of the Parliamentary Group on Patients' Rights. Parliamentarians will focus on the problems of patients and their families and will jointly seek optimal solutions to provide effective assistance to patients and their relatives. The meeting will be attended by, among others, parliamentarians, representatives of public administration institutions, medics, experts from the healthcare system and associations working on behalf of Duchenne muscular dystrophy patients, as well as representatives of the media.
Duchenne muscular dystrophy (DMD)
Duchenne muscular dystrophy is a rare genetic disease that leads to progressive and irreversible muscle atrophy. It is one of the most common and rapidly progressive neuromuscular disorders. It affects boys, occurring once in approximately 3,500-6,000 births. Significant in DMD is diagnosis, which is made more difficult by the fact that the disease produces no symptoms at first and boys appear to be born healthy ─ the first symptoms appear between 3 and 5 years of age. Weakening of the muscles in the lower limbs, difficulty in standing up and climbing stairs, hypertrophy of the calves, contracture of the Achilles tendons or a rocking gait at the hips may be indicative of the developing muscular dystrophy.
As a result of this disease, successive systems and organs are damaged, and patients require simultaneous, coordinated care by several doctors of various specialisations, including a paediatrician, neurologist, cardiologist, orthopaedist, dietician, gastroenterologist, pulmonologist, psychologist or speech therapist, as well as daily rehabilitation and pharmacological support in order to maintain function for as long as possible and prevent social exclusion of the patient. In the course of DMD, disability progresses rapidly, muscle groups become irreversibly disabled and round-the-clock care is required, until patients become totally dependent on their relatives in every aspect of their lives (including essential respiratory support). Patients generally die before the age of 30.
For years, the medical community, patients and their relatives have been pointing out that among the most pressing needs, the satisfaction of which would give patients the chance to live with dignity, is access to essential, modern therapies, which have an impact on prolonging the period of fitness and improving the quality of life of patients, used abroad and still not reimbursed in Poland.