We, Fransiska Malfait and Inge De Wandele, are a clinical geneticist and physiotherapist at the Center for Medical Genetics of the Ghent University Hospital, and we are closely involved in the diagnosis and/or care of patients with  Ehlers-Danlos syndromes (EDS) & Hypermobility Spectrum Disorders (HSD). 

Last year we were challenged by the Ehlers-Danlos Society to cycle from Cambodia to Vietnam to raise awareness for these conditions!

The  Ehlers-Danlos Syndromes are a group of heritable  disorders 
of connective tissue, that can affect multiple systems and organs of the body. Key manifestations include hypermobile joints, stretchy skin and fragile blood vessels and tissues. The severity of the different EDS types can range from mild to life-threatening conditions. Hypermobility spectrum disorders are a group of conditions related to joint hypermobility. Both EDS and HSD can significantly affect health, physical functioning, and quality of life (for more information: www.ehlers-danlos.com). Unfortunately, these conditions often go unrecognized, as they are not yet well-known by health care practitioners. By consequence, for some patients it takes years to find the correct diagnosis, treatment for their symptoms and adequate support.

Because curative treatment is not possible, patients are advised to strive for optimal health. Regular adapted sports and physiotherapy, a healthy diet, psychological support and an individualized medical follow-up are among the corner stones of the management for our patients in their journey to improve physical fitness. 

We committed to go the extra mile ourselves (in fact, the extra 310 km!) together to raise funds for EDS and HSD. We hope that by doing this, we can help improve the quality of life of those affected with these conditions, by advancing research, education and global awareness. We will be joined on this adventure by patients and/or their family members, fellow health care professionals and Board and Staff members of the EDS Society.  

We need your support to encourage us to complete this cycling challenge! Even a small amount can make a huge difference in helping us and our patients to reach this epic goal. You can support us as we overcome our challenges by donating to our sponsor page.