EHLERS-DANLOS AWARENESS MONTH

104th Regular Session Introduced by Linda Holmes and 2 co-sponsors

Declares May 2026 as Ehlers-Danlos Syndrome Awareness Month to boost awareness, diagnosis, and research funding for improving care and potential treatments.

Resolution Adopted

Summary of Bill SR 787 (Session 104th, Illinois)

Purpose and intent

Declares May 2026 as Ehlers-Danlos Syndrome (EDS) Awareness Month in the Illinois Senate.

Aims to recognize and honor individuals living with EDS and to promote awareness, scientific research, and funding toward finding cures.

Key provisions and changes

Formal proclamation by the Illinois Senate designating May 2026 as EDS Awareness Month.

Encourages scientific research and funding related to EDS to improve diagnosis, care, and potential treatments.

Background on EDS (as provided in the bill)

EDS is an inherited connective tissue disorder with 13 identified types caused by genetic defects in collagen.

Connective tissues affected include skin, tendons, ligaments, blood vessels, internal organs, and bones.

Common symptoms listed include joint hypermobility with dislocations, joint pain, easily bruising skin, digestive issues, dizziness and rapid heart rate upon standing (POTS), and possible multi-system complications.

POTS (postural orthostatic tachycardia syndrome) is noted as frequently co-occurring with EDS (estimates suggest about 80% of people with EDS have POTS).

There is currently no cure or universally effective treatment for EDS, but awareness and research may improve management and quality of life.

Affected populations and impacts

Individuals diagnosed with EDS and their families, given the emphasis on awareness, diagnosis, and access to appropriate medical care.

Healthcare providers and the broader public through increased awareness and information.

Potential beneficiaries of research funding and advocacy networks supporting EDS.

Procedural/timeline aspects

The resolution designates May 2026 as EDS Awareness Month.

The bill was filed May 12, 2026, and referred to Assignments in the Illinois Senate.

No operative fiscal provisions or statutory changes are included; it is a ceremonial/awareness proclamation.

Practical significance

Sets a state-level observance to highlight EDS, its impact, and the need for ongoing research and support networks.

Could bolster public awareness, encourage early and accurate diagnosis, and support advocacy for resources and funding related to EDS.

Sponsor

Co-sponsor: Jil Tracy

Note: This summary reflects the bill’s text and stated purpose as a Senate Resolution in the 104th General Assembly of Illinois. It does not create new laws or funding obligations beyond the ceremonial designation of Awareness Month.