POYS Communication Management GmbH
Cologne (ots)
April 17, 2023 is World Hemophilia Daythis year under the motto: “Access for All: Prevention of bleeds as the global standard of care“. Behind this is the effort to prevent bleeding in people with hemophilia worldwide through preventive measures. This not only means a better quality of life for the 4,000 hemophilia A sufferers in Germany alone, but also less damage to the joints, more normality in everyday life, less pain and more Activity.
At the end of this message, request the exclusive video with the mother of an eleven-year-old hemophiliac and a medical expert together with further press material in text, sound and image!
Hemophilia is not completely curable
Well into the 20th century, the diagnosis meant a significantly reduced life expectancy for those affected. Even today, hemophilia A is not completely curable. But there are ways to treat the disease directly with the diagnosis – even in infancy – using modern therapies.
Internal, spontaneous bleeding in particular poses a high risk for the almost exclusively male patients. “Haemophilia A patients suffer from a genetic factor VIII deficiency. Internal bleeding into the organs, especially into the joints and muscles, is common over the years can lead to joint changes and even disability,” says Dr. Carmen Escuriola-Ettingshausen, specialist in paediatrics and youth medicine at the Rhein-Main Haemophilia Center.
The goal: prevention and access to therapy for every patient
However, regular prophylaxis can counteract bleeding and the associated damage. Factor concentrates that replace the missing factor have existed since the mid-1960s. Intravenous administration of the blood coagulation factor several times a week can pose a challenge, especially for children and parents as well as patients with needle phobias or poor vein conditions, and means a drastic routine in everyday life.
There are now more modern, non-factor-based therapies for patients with severe and moderate hemophilia. These are even better protected by extended, constant effective mirrors. “The goal must be to avoid bleeding whenever possible, so that a child can explore its world and the family gains the security of allowing the child this freedom,” says Dr. Escuriola-Ettingshausen. Felix, an eleven-year-old with severe hemophilia A, can now lead an almost carefree life. Although his start in life was overshadowed by pain: “Felix was eight months old and developed hematomas on his stomach. In the university clinic, it was determined that Felix was suffering from severe hemophilia A. Our everyday life was full of hospital stays.” Yes, according to Dr. Escuriola-Ettingshausen: “With modern therapies, those affected have the opportunity to experience their everyday life more relaxed without having to think about injections several times a week.”
Support from other affected people was also very important to the Stein family. Associations such as the interest group Hämophiler e. V. or platforms such as that of SaniCourage eV Dr. Ellis Huber, doctor, health politician and member of the association, says: “Those affected have the experience: We are not alone with our worries and needs, but also with our bravery.” The website www.mutmachseiten.de therefore networks self-help groups and patients and also arranges contacts with doctors.
Modern science has made life much easier for children with haemophilia and their families with innovative treatments. And research continues to help people with this rare blood disorder lead largely normal lives.
The exclusive video with the Stein family and Dr. You can request Escuriola-Ettingshausen as well as a radio report, article and photo material exclusively from us! Write to us and we will send you the finished press kit.
Press contact:
POYS Communication Management GmbH
Nicole Weber
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Original content from: POYS Kommunikations-Management GmbH, transmitted by news aktuell
