Pride Month: Why LGBTQIA+ Inclusion Matters in EDS Research
Inclusive Research is Better Science
As we celebrate Pride Month, I want to take a moment to reflect on how the inclusion of LGBTQIA+ is important in research. LGBTQIA+ individuals have historically been left out of many research studies or included in ways that don’t fully capture their unique experiences. This isn’t just a gap in representation, it’s a gap in knowledge. It directly impacts our knowledge of the Ehlers-Danlos Syndromes (EDS )when we are not including those individuals in our work.
Inclusive research is better science. When research includes diverse voices, especially those from communities often overlooked or misunderstood, we get a better picture of the disease we are studying. This leads to better questions, more accurate data, and ultimately, care and treatments that are more effective and relevant for everyone.
People with EDS already face challenges navigating healthcare, including delays in diagnosis and limited treatment options. For those who also identify as LGBTQIA+, these challenges can multiply (to learn more about LGBTQIA+ experiences in healthcare, check out this review article). Without research that reflects those experiences, the ways their symptoms, experiences or healthcare needs differ may go unnoticed, leaving them potentially unable to benefit from research discoveries.
Inclusion in research means intentionally designing studies that consider gender identity, sexual orientation, and the intersection of these identities with complex chronic illnesses like EDS.
By embracing inclusive research, we can foucs on science that truly serves all communities. We improve diagnosis, treatment, and support for people across the spectrum of identity. And most importantly, we affirm that every person’s experience matters.
This Pride Month, I encourage researchers, clinicians, and the broader community to commit to more inclusive practices. Share content from LGBTQIA+ chronically ill creators and researchers/clinicians, ask how your work can be more welcoming and representative.
