- Target:
- EDS Network CARES, Inc.
- Region:
- United States of America
- Website:
- ehlersdanlosnetwork.org
Ehlers-Danlos Syndrome is a group of genetic disorders involving mutations in connective tissue characterized by looseness, instability, and dislocations of the joints, fragile and often hyperelastic skin that bruises, scars, and tears easily, unpredictable arterial and organ rupture causing acute pain, excessive internal bleeding, shock, stroke, and premature death.
There are six major types of Ehlers-Danlos Syndrome that are characterized by distinctive features with life being shortened for individuals with the vascular type due to the possibility of arterial or organ rupture. It is estimated the prevalence of all types of Ehlers-Danlos Syndrome is 1 in 5,000 births worldwide. A network of worldwide support groups have proved of great benefit to individuals with Ehlers-Danlos Syndrome.
Not only do these organizations put people in touch with other individuals managing life with Ehlers-Danlos Syndrome, they are also vital in providing up to date information to the medical profession and public at large. At this stage there is little research being undertaken into Ehlers-Danlos Syndrome, however, there continues to be hope that genetic testing and research will be increased. By encouraging further studies of Ehlers-Danlos Syndrome, new understanding, interventions, and improved treatments can be acquired; current work at the National Institutes of Health and other research institutions can be expanded and increased, generating a growth in the knowledge base and bring hope for a cure.
There is neither routine screening nor a cure for Ehlers-Danlos Syndrome, individuals must seek a diagnosis from a knowledgeable health care provider. Individual symptoms must be evaluated and cared for appropriately; physical and occupational therapy evaluation and intervention may be required to address basic life tasks. Early and accurate diagnosis can provide the opportunity to create life-saving emergency medical plans, ensure proper monitoring, and improve quality of life and support for Ehlers-Danlos Syndrome families before a tragedy occurs.http://www.youtube.com/watch?v=pmrF8Uh-Hyk
We, the undersigned, call on each Individual State throughout the United States to make May Ehlers-Danlos Awareness Month.
Ehlers-Danlos Syndrome is rare and knowledge of the disease is poorly misinterpreted. It is of the utmost importance that this petition to proclaim May as Ehlers-Danlos Month must be accepted and approved, to sustain life to those affected persons and families and to give the medical field the power to undertake more knowledge of this syndrome which usually results in a diagnosis after a sudden death in a family.
You can further help this campaign by sponsoring it
The Make May Ehlers-Danlos Syndrome Awareness Month petition to EDS Network CARES, Inc. was written by Wendy Kalivoda and is in the category Local Government at GoPetition.