What Is Needed for Ehlers-Danlos and Hypermobility Syndromes Patients in Belgium?
In our series of interviews with patients, we talked to Audrey Muschter to give us a qualified answer on what is needed for Ehlers-Danlos and hypermobility syndromes patients in belgium. She’s a 42-year-old Ehlers-Danlos patient (a rare connective tissue disorder), advocate, and nurse (which unfortunately she had to give up when she started using a wheelchair). She is also a board member of Zebrapad VZW, and represents these patients as a member of different focus groups in Vlaams Patiënten Platform, Noozo, Radio, and in the patient advisory council for scientific research at UZ Gent. Zebrapad represents the interests of patients with Ehlers-Danlos syndrome and Hypermobility spectrum disorder and does fundraising for research.
What’s the current situation of hypermobility and Ehlers-Danlos and hypermobility syndromes patients in Belgium like? Where is it heading?
Most doctors in Belgium are not familiar with this condition. It is often up to the patient to do the search to find specialist doctors who are committed to these syndromes. This means that we often have to go to different hospitals for different disciplines and that we often rely on the knowledge of fellow patients who have had a good experience with a physician familiar with these conditions.
What would you like to see happening for them in the future?
It would be nice if there were a center such as the National MS Center, where patients can go for diagnosis, examination, and treatment of all symptoms. Today UZ Gent is the reference center for diagnosis, but after the diagnosis patients have to bring together by themselves a multidisciplinary team including rheumatologists, neurologists, cardiologists, orthopedists, dermatologists, gynecologists, urologists, gastroenterologists, etc.
What advice would you give the participants of Hack Healthcare to provide solutions for hypermobility and Ehlers-Danlos Syndromes patients?
We know that this will not be solved overnight but it would already be very nice if there was a certain database where doctors are asked about their expertise with rare diseases that patients could consult. This would allow patients to find an overview of doctors who have knowledge and are interested in these conditions, which would allow patients to put themselves in the right hands faster, with potential complications being treated earlier, which can mean a significant improvement in quality of life.
What interests you the most about Hack Healthcare and why?
I think that the two challenges that fit our problem best are Better Health Choices Every Day and Unleash Predictive Analytics, both part of the Personalised Prevention theme.
What would you like to see coming out of Hack Healthcare about those themes?
Registration of data such as symptoms, behavior, diet, etc. that are then checked by systems and physical specialists to prevent premature complications. Patients may then end up with the right expert more quickly, with a digital follow-up, teleconsulting, etc. This would avoid unnecessary transportation, and can save time and costs. It is not necessary to be physically on-site every time or in every situation. Doctors may then be able to spend more time with the patients when they are physically on-site. Each idea is a potential step towards the healthcare of the future that will no longer leave patients out in the cold!
Zebrapad VZW supports scientific research and organizes activities and campaigns to raise funds for Ehlers-Danlos Syndromes and hypermobility. Their core tasks consist of providing information, education, support, and advice in the field of Ehlers-Danlos Syndromes and hypermobility.