The Ehlers-Danlos Society – Commentary on the International Paralympic Committee Rules and Regulations with regards to Ehlers-Danlos Syndrome
The Ehlers-Danlos Society is aware that people with Ehlers-Danlos Syndrome (EDS) have challenged discrimination towards them by the International Paralympic Committee (IPC). Our understanding is that application has been rejected solely on the basis of the presence of having EDS.
We base our understanding of the IPC position on their publications “IPC – Athletics Classification Rules and Regulation” (2016) and “World Para Athletics Classification Rules and Regulations” (2018). With regard to these rules and regulations, the following is our considered opinion:
1. With regard to the IPC position on ‘hypermobility’, and ‘instability’:
a). Range of movement and therefore also hypermobility is measurable objectively, however, what is lacking are comparative norms across all populations by age, gender, and race. Asymptomatic joint hypermobility of itself is not a disability. However, this should have no bearing on the assessment of a symptomatic person with loss of function considered related to their hypermobility.
b). We recognize that joint instability is not easily measured in terms of its contribution to functional disability. Within the International Consortium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (which we, the Society, facilitate), the Allied Health Professional working group is currently considering this with regard to utility of current diagnostic criteria, clinical assessment, and management.
c). The presence of joint hypermobility and joint instability may occur in isolation or may be a sign of an underlying connective tissue disorder.
d). In addition, joint dysplasia is a recognized complication of certain connective tissue disorders including some types of EDS. Joint dysplasia may render a joint(s) hypermobile and/or unstable.
e). The chronic mechanical concerns that arise in unstable, hypermobile, and/or dysplastic joints can lead to arthritic pathologies such as tendinopathy, cartilage damage, and secondary osteoarthritis, that impact mobility. These may, but not necessarily result in permanent functional impairment and disability.
f). In our opinion, at an individual level, and regardless of the underlying diagnosis, these musculoskeletal impairments might be so substantial as to impact joint function and meet the ‘range of movement’ impairment criteria of the IPC.
2. Specifically, with regard to Ehlers-Danlos Syndromes (EDS)
a). Our reading is that automatic exclusion of EDS is not in keeping with the IPC’s own policy. The IPC states “An Athlete who is affected by an eligible impairment in combination with any of the non-eligible impairments listed below may be eligible, but Athletes affected only by the impairments listed below are not eligible.” This infers that a person with EDS is not excluded if they are affected by an eligible impairment.
b). With regard to EDS, we find one reference to non-eligibility, in the 2016 Classification Rules and Regulations, namely, “Hypotonia (e.g. associated with Down syndrome, Ehlers-Danlos syndrome)”. We also find this in Appendix 4, Section 2 of the 2018 publication.
c). It is not clear to us why ‘hypotonia’ is not considered a disability.
d). It is also not clear to us why the blanket term ‘Ehlers-Danlos syndrome’ is being used as, seemingly a ‘catch-all’ for what is a spectrum of disorders in the same family, and in which the truly ‘hypotonic’ subtypes are rare.
e). If individuals with EDS are being excluded solely on the basis of this subclause, in our opinion the IPC needs to amend its statement on Hypotonia so as not to conflate Hypotonia and EDS – not all people with EDS are Hypotonic.
f). If individuals with EDS are being excluded solely on the basis of the diagnosis of EDS and in the context of hypermobility, instability, and hypotonia (Appendix 4, Section 2 (2018)), in our opinion those individuals with EDS who have musculoskeletal complications that meet the eligibility criteria are being discriminated against.
The Ehlers-Danlos Society
Published July 2020