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JaxLegacy

Ehlers-Danlos Syndrome

 
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About

 

JaxLegacy was founded as a fundraising organization to support Jackie Stager and her family with rising medical costs due to  a genetic connective tissue disorder called Ehlers-Danlos Syndrome (others in the family have EDS too).  In 2015, the first JaxLegacy Race for Ehlers-Danlos Syndrome and Chiari Malformation was held in Sherman, CT.

Due to the important role collagen plays in the body, many systems are directly compromised with EDS.  Along with Chiari Malformation (www.csfinfo.org), Jackie has also been diagnosed with gastroparesis, postural orthostatic tahcycardia syndrome, Reynaud's disorder, cerebral spinal fluid leak (repaired, but may re-occur), significant joint hypermobility and instability, and a mild clotting disorder.

Activities once enjoyed are no longer possible and every day is a day to be careful. Considering the constant ups and downs of life with EDS, Jackie remains steadfast with a smile on her face. Most people don't know how much she hurts every moment of every day. 

It is the intention of JaxLegacy to become a non-profit organization to support research  and families faced with financial hardship due to medical costs associated with Ehlers-Danlos Syndrome. In addition, Jackie and her mom, Eloise are available to speak to your school, club or organization about EDS and Invisible Illness.

 

More information about Ehlers-Danlos Syndrome can be found at www.ehlers-danlossociety.com

Click on the link below to watch a news clip about Jackie and rare diseases:

http://www.wfsb.com/story/30317675/task-force-aims-to-help-patients-of-rare-diseases