res23316

R 316

2023 -- S 1022
Enacted 05/16/2023

S E N A T E R E S O L U T I O N

PROCLAIMING MAY OF 2023, TO BE "EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS AWARENESS MONTH" IN THE STATE OF RHODE ISLAND

Introduced By: Senators Lawson, Lauria, Britto, Cano, F. Lombardi, Felag, Ujifusa, Lombardo, Mack, and Bell

Date Introduced: May 16, 2023

WHEREAS, Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue

disorders caused by different underlying abnormalities in collagen that together affect 1 in 5,000

people of every age and race; and

WHEREAS, Each type of EDS has its own set of symptoms, but some features seen

across all types of EDS include joint hypermobility and dislocation, fragile, hyperextensible skin

that bruises and scars easily, and tissue fragility; and

WHEREAS, EDS is often inherited and can affect multiple generations within a family;

and

WHEREAS, There is neither routine screening nor a cure for EDS, and treatment focuses

on managing symptoms and preventing dangerous complications; and

WHEREAS, Severe cases can be associated with unpredictable tearing of blood vessels

and organs, leading to internal bleeding and other potentially life-threatening complications; and

WHEREAS, Hypermobility Spectrum Disorders (HSD) are connective tissue disorders

that cause joint hypermobility, instability, injury, pain, fatigue, headaches, GI problems, and

autonomic dysfunction; and

WHEREAS, HSD is diagnosed when the musculoskeletal complications of joint

hypermobility and joint stability, such as joint movement beyond the normal range, joint pain,

and dislocations, arise in a person who does not have the defining features of an underlying

syndrome such as EDS or other heritable disorders of connective tissue; and

WHEREAS, In addition, several related disorders are observed in a number of people of

EDS and with HSD, which can add complexity to the presentation of their condition and its

management; and

WHEREAS, There is no cure for any type of EDS or HDS and conditions are managed

by addressing a person's individual symptoms; and

WHEREAS, EDS and HSD can cause a variety of symptoms in many different areas of

the body, so people with these conditions often require multiple providers in different specialties

to manage their care; and

WHEREAS, Access to professionals who are knowledgeable about EDS and HSD is

limited not only in Rhode Island, but across the world; and

WHEREAS, Individuals with EDS and HSD can sometimes remain undiagnosed for

decades, while their symptoms progress and become more difficult to treat; and

WHEREAS, Improved knowledge and recognition of EDS and HSD will lead to earlier

detection and medical management, thereby reducing the burden of disease and its negative

impact on families; and

WHEREAS, Continued research is needed to better understand EDS and HSD and

encouraging further studies can lead to breakthroughs in genetic testing, treatments, and other

medical interventions, generating growth in the knowledge base and bringing hope for a cure;

now, therefore be it

RESOLVED, That this Senate of the State of Rhode Island hereby proclaims May of

2023, to be "Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness

Month" in the State of Rhode Island; and be it further

RESOLVED, That the Secretary of State be and hereby is authorized and directed to

transmit a duly certified copy of this resolution to Ms. Susan Hawkins, Chair, The Ehlers-Danlos

Society.

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LC002964

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