Wednesday, November 10, 2010

Help Us Support the Ehlers-Danlos Syndrome (EDS) Network

On November 13th, San Diego Roller Derby be supporting Ehlers-Danlos Syndrome (EDS). The team has a personal connection to this disorder and has joined forces with EDSNC to find a cure or treatment to end the suffering for so many people. Our very own Sweet Pain was diagnosed in 1999 with mild symptoms of connective-tissue and joint looseness. In 2007 Sweet Pain was diagnosed with the most fatal type of EDS when after a year of mini strokes and increased pain the doctors found a cerebral aneurysm and had to perform brain surgery. She is one of the lucky ones but has a long road ahead of her. Unfortunately since this is a genetically inherited disorder it was passed down to her oldest daughter, Jenna Garcia, who suffers from repeated dislocations. Diagnosed in 2009 Jenna submitted to the state of California to have May EDS Awareness Month. Please help SDRD and our EDS friends raise money to help find a cure or at least find a treatment.

The money is going to Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc. which is a non-profit organization ran only by volunteers to help fund research to find a cure or treatment for EDS. What this means is all donations and all money they make goes directly towards a cure and nothing else, which is great! If they keep getting enough funding, Dr. Hal Dietz at John Hopkins will find a cure or at least an effective treatment within 5 years. If not, it will take much longer.
Ehlers-Danlos Syndrome is a genetically inherited connective-tissue disorder that affects all body systems and can be extremely painful and debilitating for those who have it. Just a few of the many symptoms of this disorder include extreme joint looseness leading to repeat dislocations of various joints, stretchy or fragile skin that easily tears, cardiac effects, osteoarthritis, and among the most fatal are fragile blood vessels causing aneurysm. There are up to 7 types of this disorder however many folks have symptoms from multiple types. Some people will have minor issues that do not affect them and they may never know they have it, while others die from this disorder due to aneurysm or other complications relating to EDS. Children suffer the most from this disorder and many are so fragile that they pass away at a young age due to ruptures. The average life expectancy of someone with the most severe types is 40 years of age, however some children will not live past the age of 14.

EDSNC has been fighting for more funding to find a cure within the next 5 years. In the meantime, children and young adults will pass away from this terrible disorder. People who don't know they have it will pass away or suffer needlessly. Please help spread awareness so that a cure can be found and these deaths and suffering can be prevented.