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1
HOUSE RESOLUTION

 
2     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
 
10     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
 
17     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
 
26     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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1 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
 
4     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
 
11     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
 
17     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
 
25     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
 
29     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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1 Awareness Month; and be it further
 
2     RESOLVED, That a suitable copy of this resolution be sent
3 to the Ehlers-Danlos Foundation.