2023 -- S 1022
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LC002964
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S TATE OF RHODE IS LAND
IN GENERAL ASSEMBLY
JANUARY SESSION, A.D. 2023
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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 SPECTR UM DISORDERS AWARENE SS MONTH" IN THE STATE OF
RHODE ISLAND
Introduced By: Senator Valarie J. Lawson
Date Introduced: May 16, 2023
Referred To: Recommended for Immediate Consideration
WHEREAS, Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue 1
disorders caused by different underlying abnormalities in collagen that together affect 1 in 5,000 2
people of every age and race; and 3
WHEREAS, Each type of EDS has its own set of symptoms, but some features seen 4
across all types of EDS include joint hypermobility and dislocation, fragile, hyperextensible skin 5
that bruises and scars easily, and tissue fragility; and 6
WHEREAS, EDS is often inherited and can affect multiple generations within a family; 7
and 8
WHEREAS, There is neither routine screening nor a cure for EDS, and treatment focuses 9
on managing symptoms and preventing dangerous complications; and 10
WHEREAS, Severe cases can be associated with unpredictable tearing of blood vessels 11
and organs, leading to internal bleeding and other potentially life-threatening complications; and 12
WHEREAS, Hypermobility Spectrum Disorders (HSD) are connective tissue disorders 13
that cause joint hypermobility, instability, injury, pain, fatigue, headaches, GI problems, and 14
autonomic dysfunction; and 15
WHEREAS, HSD is diagnosed when the musculoskeletal complications of joint 16
hypermobility and joint stability, such as joint movement beyond the normal range, joint pain, 17
and dislocations, arise in a person who does not have the defining features of an underlying 18
syndrome such as EDS or other heritable disorders of connective tissue; and 19
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WHEREAS, In addition, several related disorders are observed in a number of people of 1
EDS and with HSD, which can add complexity to the presentation of their condition and its 2
management; and 3
WHEREAS, There is no cure for any type of EDS or HDS and conditions are managed 4
by addressing a person's individual symptoms; and 5
WHEREAS, EDS and HSD can cause a variety of symptoms in many different areas of 6
the body, so people with these conditions often require multiple providers in different specialties 7
to manage their care; and 8
WHEREAS, Access to professionals who are knowledgeable about EDS and HSD is 9
limited not only in Rhode Island, but across the world; and 10
WHEREAS, Individuals with EDS and HSD can sometimes remain undiagnosed for 11
decades, while their symptoms progress and become more difficult to treat; and 12
WHEREAS, Improved knowledge and recognition of EDS and HSD will lead to earlier 13
detection and medical management, thereby reducing the burden of disease and its negative 14
impact on families; and 15
WHEREAS, Continued research is needed to better understand EDS and HSD and 16
encouraging further studies can lead to breakthroughs in genetic testing, treatments, and other 17
medical interventions, generating growth in the knowledge base and bringing hope for a cure; 18
now, therefore be it 19
RESOLVED, That this Senate of the State of Rhode Island hereby proclaims May of 20
2023, to be "Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness 21
Month" in the State of Rhode Island; and be it further 22
RESOLVED, That the Secretary of State be and hereby is authorized and directed to 23
transmit a duly certified copy of this resolution to Ms. Susan Hawkins, Chair, The Ehlers-Danlos 24
Society. 25
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LC002964
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