Senate designates May 2025 as Ehlers Danlos awareness month

The Oregon Senate convened on April 21, 2025, to discuss House Concurrent Resolution 4 (HCR 4), which aims to designate May 2025 as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month. Senator Bono led the discussion, emphasizing the urgency of the resolution as it seeks to raise awareness about these often misunderstood conditions.

Ehlers-Danlos Syndromes (EDS) encompass a group of 13 heritable connective tissue disorders caused by genetic changes affecting connective tissue. Common symptoms include joint hypermobility, skin hyperextensibility, and tissue fragility. Hypermobility Spectrum Disorders (HSD) are related conditions that can lead to joint instability, pain, and other systemic issues such as fatigue and gastrointestinal problems. Currently, there is no cure for either EDS or HSD.

Senator Bono highlighted the significant challenges faced by patients, including lengthy delays in diagnosis—often exceeding a decade—and frequent misdiagnoses. He referenced a 2021 editorial in the American Journal of Medical Genetics, which pointed out that while some forms of EDS are considered rare, the hypermobile type is increasingly recognized as more common. The senator noted that many healthcare professionals may not be adequately informed about these conditions, leading to misconceptions that they are primarily mental health issues.

The senator called for a holistic and multidisciplinary approach to care, which is currently lacking. He stressed the importance of increasing awareness among both the public and medical professionals to improve the quality of life for those affected by EDS and HSD. The resolution has already passed in the House and is expected to receive unanimous support in the Senate.

In conclusion, the passage of HCR 4 is seen as a crucial step toward enhancing understanding and support for individuals living with EDS and HSD. By designating May as awareness month, the Oregon Legislature aims to foster greater recognition of these conditions and improve access to appropriate care and resources for affected individuals.