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Ruppersberger Introduces Resolution Designating Month of May as Ehlers-Danlos Syndrome Awareness Month

Apr 28, 2021
Press Release
EDS is a rare genetic disorder that causes damage to collagen

(Washington, DC) –  Congressman C.A. Dutch Ruppersberger has introduced legislation designating the month of May as Ehlers-Danlos Syndrome (EDS) Awareness Month to increase awareness of this potentially-fatal genetic disease that currently has few treatment options and no cure.

As few as one in 2,500 to 5,000 individuals suffer from some form of EDS, although experts believe EDS is significantly underreported due to a lack of knowledge, even within the medical community. Congressman Ruppersberger’s resolution – inspired by a staff member who suffers from EDS – builds on a wave of recent attention to EDS, thanks to celebrities and public figures sharing their own experiences with the genetic disorder.

“EDS largely remains a mystery not only to patients but many doctors, making accurate diagnoses and management nearly impossible,” Congressman Ruppersberger said. “It is my hope that this legislation will not only raise awareness of this debilitating disease, but reduce discrimination toward patients suffering from EDS and inspire research toward a cure.”

EDS represents a group of 13 genetic disorders that cause irreparable damage to collagen – one of the major structural components of the body and an essential building block in strengthening connective tissue. Individuals who suffer from EDS experience a range of symptoms which vary from mild to life-threatening, often worsening as they age. These symptoms cause chronic pain, joint instability and dislocation, fragile skin that easily bruises and scars, poor wound healing, autonomic dysfunction, neurological symptoms, gastrointestinal issues, cardiovascular and hematologic complications and, at its very worse, fatal blood vessel and organ ruptures.

H.Res. 335 was referred to the House Committee on Energy and Commerce for consideration.

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