Full Text of HR1116 94th General Assembly
HR1116 94TH GENERAL ASSEMBLY
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| HOUSE RESOLUTION
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| WHEREAS, Ehlers-Danlos Syndrome (EDS) is a group of | 3 |
| inherited disorders characterized by excessive looseness and | 4 |
| instability of the joints, fragile and hyperelastic skin that | 5 |
| bruises, scars, and tears easily, and major blood vessels that | 6 |
| can disintegrate catastrophically; the overall prevalence of | 7 |
| all types of Ehlers-Danlos Syndrome is estimated at 1 in 5,000 | 8 |
| births worldwide, representing over 75,000 Americans and 1.5 | 9 |
| million globally; and
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| WHEREAS, Some forms of Ehlers-Danlos Syndrome involve | 11 |
| serious, life-threatening, or fatal complications; major blood | 12 |
| vessels, organs, and the aorta can tear or rupture | 13 |
| unpredictably, causing acute pain, internal bleeding, shock, | 14 |
| and premature death; life can be foreshortened for those with | 15 |
| this vascular type: the average life span is only to the | 16 |
| forties and tragically, many die in their teens; and
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| WHEREAS, It is the mission Ehlers-Danlos National | 18 |
| Foundation (EDNF) to provide information and advocacy for | 19 |
| people living with Ehlers-Danlos Syndrome and to provide a | 20 |
| network of support and knowledge to the medical profession, | 21 |
| greater healthcare community, and public at large; currently, | 22 |
| there is little research dedicated to EDS outside of research | 23 |
| funded by EDNF; increased interest, study, and understanding of | 24 |
| EDS and its genetic connections will generate breakthroughs | 25 |
| that may provide better screening, treatments, and a cure; and
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| WHEREAS, There is neither screening nor a cure for | 27 |
| Ehlers-Danlos Syndrome and individual symptoms must be | 28 |
| evaluated and cared for appropriately; physical and | 29 |
| occupational therapy, evaluation, and intervention by | 30 |
| rehabilitation specialists is often required to address basic | 31 |
| life tasks; appropriate therapy and treatment is especially | 32 |
| essential for EDS in children; early and accurate diagnosis |
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| will provide the opportunity to create life-saving emergency | 2 |
| medical plans, ensure proper cardiac monitoring, and allow for | 3 |
| the optimum quality of life for EDS families; and
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| WHEREAS, Ehlers-Danlos Syndrome is frequently misdiagnosed | 5 |
| or undiagnosed for decades, resulting in greater discomfort and | 6 |
| disability; the vascular form may only be recognized with the | 7 |
| advent of an often-fatal medical emergency; for some, the | 8 |
| diagnosis only accompanies autopsy; earlier recognition can | 9 |
| prevent many of these premature and tragic deaths and allow | 10 |
| earlier and more effective management of EDS; and
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| WHEREAS, Increased awareness of Ehlers-Danlos Syndrome in | 12 |
| the medical profession will allow earlier diagnosis, | 13 |
| treatment, and care to ensure hope of a better life and | 14 |
| participation in society; the reduced disability, pain, and | 15 |
| expense will offer tangible positive effects and an enhanced | 16 |
| quality of life for EDS families; and
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| WHEREAS, It is imperative that additional funding be | 18 |
| dedicated to research this underrecognized and | 19 |
| under-diagnosed condition; by fostering and funding further | 20 |
| studies of EDS, new understanding of syndrome processes and | 21 |
| therapeutic interventions can be acquired; current work at the | 22 |
| National Institutes of Health and other research institutions | 23 |
| can be expanded and increased, generating an increased | 24 |
| knowledge base; and
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| WHEREAS, In memory of all of our families and friends who | 26 |
| have died from Ehlers-Danlos Syndrome, the Ehlers-Danlos | 27 |
| National Foundation will continue to educate and fund research | 28 |
| so that someday we will see a brighter day; therefore, be it
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| RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE | 30 |
| NINETY-FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that | 31 |
| we designate the month of
May
2006 as Ehlers-Danlos Syndrome |
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| Awareness Month; and be it further
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| RESOLVED, That a suitable copy of this resolution be sent | 3 |
| to the Ehlers-Danlos Foundation.
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