AJR92

A Joint Resolution designating May of each year as “Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month.”

Whereas, Ehlers-Danlos Syndrome (EDS) represents multiple genetic disorders involving mutations in connective tissue that are characterized by looseness, instability, and dislocation of the joints and fragile skin that easily bruises and scars; and

Whereas, EDS is caused by mutations in genes involved in the structure and production of collagen or collagen-related proteins; and

Whereas, EDS primarily affects the skin, joints, and blood vessel walls, making them more fragile and stretchy than normal; and

Whereas, The key characteristics of EDS are hypermobile joints, hyperextensible or ‘stretchy’ skin, fragile skin, chronic pain, and fatigue; and

Whereas, There are 13 types of EDS, including hypermobile, classical, vascular, and kyphoscoliotic forms, and each type has specific genetic causes and symptoms; and

Whereas, It is estimated that EDS affects at least 1 in 5,000 people worldwide; and

Whereas, Early and accurate diagnosis can provide the opportunity to create lifesaving medical plans and ensure the quality of life of those diagnosed with EDS; and

Whereas, Diagnosis of EDS involves a clinical examination to assess joint mobility, skin elasticity, and other physical signs, along with a review of family history due to its genetic nature; and

Whereas, Because EDS can mimic other conditions, diagnosis is often delayed and requires evaluations by specialists familiar with connective tissue disorders; and

Whereas, Treatment for EDS focuses on managing symptoms and preventing complications through approaches like physical therapy, to improve joint stability, pain management strategies, and avoiding high-risk activities, and EDS support groups also help connect those managing life with the disease to available treatment services; and

Whereas, There is currently no cure for EDS but ongoing medical research and growing awareness offer hope for improved treatment and, ultimately, a cure; and

Whereas, Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain; and

Whereas, HSD occur when a person has symptomatic joint hypermobility that cannot be explained by other conditions; and

Whereas, A person with HSD may have joint instability as their only concern or may have other medical issues as well; and

Whereas, Problems such as fatigue, headaches, gastrointestinal problems, and autonomic dysfunction are often seen as part of HSD; and

Whereas, Hypermobility that does not cause pain or other symptoms is referred to as “asymptomatic joint hypermobility” and does not need to be treated; and

Whereas, In fact, being “flexible,” “bendy,” or “double-jointed” is not usually a problem, and for some, like dancers or gymnasts, it is an advantage; and

Whereas, Additionally most babies and young children are naturally very flexible. While many people lose this flexibility as they grow older, hypermobility can persist into adulthood in up to 20 percent of the population; and

Whereas, Both EDS and HSD involve joint hypermobility, chronic pain, fatigue, and, in some cases autonomic org gastrointestinal symptoms. In New Jersey, the Robert Wood Johnson University Hospital offers specialized care for individuals seeking diagnosis or management of EDS and HDS; and

Whereas, May is National Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month, a month dedicated to raising awareness for people with EDS and HSD; and

Whereas, Designating May of each year as “Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month” in New Jersey will help increase awareness of this heritable connective tissue disorder and encourage continued research into improving the diagnosis and treatment of EDS and HSD; now, therefore,

Be It Resolved by the Senate and General Assembly of the State of New Jersey:

1. The month of May of each year shall be designated as “Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month” to increase awareness of this heritable connective tissue disorder syndrome, its impact on the residents of this State, and to promote continued research into finding the underlying causes for these medical conditions.

2. The Governor is respectively requested to annually issue a proclamation recognizing May of each year as “Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month” in New Jersey, and call upon public officials and the citizens of this State to observe the day with appropriate activities and programs.

3. This joint resolution shall take effect immediately.

STATEMENT

This resolution designates May of each year as “Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month.”

Ehlers-Danlos Syndrome (EDS) represents multiple genetic disorders involving mutations in connective tissue that are characterized by looseness, instability, and dislocation of the joints and fragile skin that easily bruises and scars. There is currently no treatment for EDS and no known cure. Treatment for EDS focuses on managing symptoms and preventing complications through approaches like physical therapy, to improve joint stability, pain management strategies, and avoiding high-risk activities, and EDS support groups also help connect those managing life with the disease to available treatment services.

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain.

Problems such as fatigue, headaches, gastrointestinal problems, and autonomic dysfunction are often seen as part of HSD.

Both EDS and HSD involve joint hypermobility, chronic pain, fatigue, and sometimes autonomic or gastrointestinal symptoms. Ongoing medical research and growing awareness offer hope for improved treatments and, ultimately, a cure for EDS and HSD. In New Jersey, the Robert Wood Johnson University Hospital offers specialized care for individuals seeking diagnosis or management of EDS and HSD.

May is recognized as Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month nationally, dedicated to raising awareness and support for those affected by these conditions. Officially designating May as “Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month” in New Jersey would help increase public understanding of these heritable connective tissue disorders and promote continued research aimed at improving diagnosis and treatment.