Imagine waking up each morning, wondering if your joints are dislocated or not, or just the simple thought of how much pain will I be in today? That’s a hard life to live but millions do it every day who suffer from this debilitating disorder. Ehlers-Danlos Network CARES, Inc. is joining up with EDS Today to raise money for essential research to better understand the disorder, and work towards a cure.
Right now, Chase Community Giving is looking forward to awarding $250,000 to a charity that receives the most votes and EDS TODAY needs your help to win this much needed award money. It’s as simple as sparing 20 seconds of your day to vote that can save a life and stop the pain. The voting is taking place right now and together, we can make the world a better place for so many Ehlers-Danlos Syndrome (EDS) patients.
Each day is critical for any human suffering from the painful and paralyzing disorder; because it’s one more day of suffering that may be avoided if a cure is found.
You may ask; what is Ehlers-Danlos Syndrome?
EDS is caused by an inherited abnormality in a protein. EDS patients suffer with fragile skin, loose joints and frail tissue that results in an extremely painful daily existence.
Ehlers-Danlos Syndrome sufferers lack the normal collagen (normal protein or the glue) necessary in binding together the cells of their tissues. Ehlers-Danlos Syndrome has many different faces, ages, genders, and knows no socio-economic barriers. There are six major types of Ehlers-Danlos Syndrome (EDS). All of them are under-diagnosed; an estimated 60-70% of the deadly Vascular EDS are undiagnosed entirely. Because of the lack of adequate diagnosis, quality medical care is impacted. With improved awareness, EDS sufferers can receive proper care, thus reducing injury and premature death.
Every vote cast for EDS TODAY will go toward helping those suffering from EDS in the area of essential life-saving research to find better treatment and a cure for this genetic disorder. As of today, the statistics show that 1 in every 5,000 individuals worldwide is suffering from Ehlers-Danlos Syndrome.
Peggy Snuggs of Ehlers-Danlos Network CARES states "I think it’s important for people to know what they are voting for. EDS Today is a sister organization to Ehlers-Danlos Syndrome Network CARES, Inc. We are endorsing them and asking people to vote because the money supports the ongoing research conducted by Dr. Dietz at John Hopkins and will save lives.”
Snuggs goes on to say “EDS Today is an all volunteer, non-profit organization that puts out a publication written by people with Ehlers-Danlos Syndrome for people with EDS." Shannon Rose, who lives with EDS, and is the national spokesperson for Ehlers-Danlos Syndrome Network CARES stated: “My life as a normal child ended at age two with the onset of EDS. Now 35, the constant pain is something I live with on a daily basis and is unimaginable to the normal person. I can dislocate a limb and not beware of it until a doctor’s diagnosis, which can be extremely dangerous.” “We need your help. It is in your hands, it is in the power of the people.”
For more information on Ehlers-Danlos Syndrome; please visit http://ehlersdanlosnetwork.org/