Videos for the International Mucopolysaccharidosis Day on 15.5.2019 Rare disease MPS? Challenge Accepted!
„I want to be a financially independent woman,“ says Barbara, 36. The young Greek speaks for many women. But for Barbara this is a special challenge: she has mucopolysaccharidosis, a rare disease that can lead to physical and mental limitations. MPS Europe offers a platform to attract more awareness for people like Barbara. Therefore, the European Patient Organisation of MPS Patients has published video statements from patients, their relatives and their physicians on the international MSP Day on 15.5.2019. A life-affirming project that shows the very personal stories of a rare disease.
Aschaffenburg, 15th of May 2019 – The challenges faced by people with mucopolysaccharidosis (MPS) on a daily basis are as varied as the diseases themselves. The progressive storage disease leads to severe physical and sometimes cognitive limitations. The European patient organisation MPS Europe has asked people with MPS, their relatives and their physicians: What is your MPS Challenge? Short video statements were created from the answers, which give a very personal insight into the wishes and needs. Above all, patients want one thing: to lead a completely normal life! They want to do sports, drive a car and take up a career regardless of their illness. „My MPS challenge is to play football, even if my legs hurt,“ says 13-year-old Petar. Maria, 25, on the other hand, reports: „My current challenge is to get a car that is adapted to my requirements“.
For physicians, the challenge starts earlier. They want a faster diagnosis of the MPS disease – and above all: better treatment options. Some treatments have already been approved for some forms of MPS,but are not yet available in all European countries. Dr. Christina Lampe, Giessen University Hospital, sees her MPS challenge in providing optimal care for every MPS patient, even if the disease is very individual. Jan Krauskopf wants a life worth living for his son Justus. He is suffering from a form of MPS that cannot yet be treated. „It is my goal that he has joy in life, even if it is only for a limited time.“
The videos can be viewed on the YouTube Channel of MPS Europe:
MPS belongs to the rare, hereditary diseases. A gene mutation in MPS patients leads to a progressive accumulation of glucosaminoglycans (GAG) in the cells. The disease has a changed facial shape, a small stature, skeletal changes and an enlarged liver and spleen. Over time, patients develop organ dysfunctions such as heart and respiratory problems. The visual and hearing systems may be impaired. Some forms of MPS also lead to mental impairment. However, the signs and symptoms of the disease vary greatly and can be of varying severity. Five of the eleven different types of MPS already have an effective treatment, but it is not yet used and reimbursed in all European countries. The prevalence for all forms of MPS is 1: 35,000.
About MPS Europe
MPS Europe gGmbH is the umbrella organisation of national MPS companies from 12 European countries: Austria, Denmark, Germany, Ireland, Italy, Hungary, Netherlands, Serbia, Spain, Sweden, Switzerland and Great Britain. The aim is to bring national MPS societies together and to support all MPS patients in Europe in order to work together in the interest of the MPS community. MPS Europe is headquartered in Aschaffenburg, Germany. Further information can be found at www.mps-europe.org.
MPS Europe gGmbH
Dorothea Küsters Life Science Communications GmbH
Leimenrode 29, 60322 Frankfurt/M,
Dr. Anna Müllner, Bettina Sieber
T: 069/61 998-18, -27; F: 069/61 998-10