The Ehlers-Danlos Society, in collaboration with The Norris Lab, advises that it is too soon to be offering a genetic test for hypermobile Ehlers-Danlos syndrome (hEDS) looking for the KLK gene variants that were presented in the recent preprint released by The Norris Lab, and that further studies are needed to replicate and understand the findings.
The genetic experts who advise The Ehlers-Danlos Society and sit on their Medical and Scientific Board, and on the International Consortium for EDS and HSD, are not currently testing for this gene variant.
If a lab offers this test, please first ensure for your own well-being that they and/or the doctor ordering it understand the KLK15 gene variants and that a genetic counselling service can advise you on the findings.
For any support and further information please contact The Ehlers-Danlos Society helpline.
