National spokesperson for Ehlers-Danlos syndrome (EDS), Shannon Rose, is deeply committed to increasing national awareness of EDS because he has bravely fought the disorder his whole life. Shannon Rose is a testament to the tenacity and power of the human spirit when it is driven to survive and he is dedicated to educating the public about the complexity of Ehlers-Danlos syndrome.
Shannon has battled with this condition from losing his voice for a year to losing the use of his arms to making his home in the hospital.
Due to the rarity of EDS, May has become the official Awareness Month and one of the main issues with awareness is that many doctors have little to no experience in treating Ehlers-Danlos which can be frustrating to the few who suffer from this uncommon and often life threatening disorder.
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