Introduction
Hypermobility-Ehlers Danlos Syndrome (type III) was inherited by my mom and sister. The chronic pain is persistent, unyielding, disabling and affects almost every aspect of their lives. Throughout this time I have seen how they have used sensory art therapies, such as art and music, to cope both actively and passively with the symptoms of this disorder. Music has allowed my sister to recover faster from panic attacks, distracts her from the intense pain she experiences when she is confined to bed because of dislocations. She listens to music 24/7: it helps her remain positive. Throughout many sleepless nights she sketches and listens. Many people with EDS, including my sister, have suffered due to the lack of awareness by medical …show more content…
EDS is so rarely diagnosed that it is unique to meet another person with it. It is so rare that there is not even a TED talk about it, and doctors have to google it before they treat their patient. It is so rare that most people have never heard of it and there has not been more than one collective subjective study for EDS patients. Dr. Forest Tennant stated the “more painful than the pain experienced by a cancer patient undergoing Chemotherapy”. The pain in EDS may occasionally be classified as intractable pain: pain that may cause reclustity, and is not relieved by medical procedures or interventions. Yet, because these people look normal---they are silenced, misdiagnosed, neglected, unheard, marginalized, and often told their gentic disorder is “all in their head”. Therefore I have taken an eclectic approach to my data extraction. For example, My sister told me her favorite song is James Arthur’s Recovery. For her, the verses audiate her emotions surrounding EDS and relate the lack of perception and isolation within the EDS …show more content…
Growing up, my sister would be on and off of crutches, become nauseous when exposed to bright lights or gum chewing, and tire at a rapid rate. I did not understand that she suffered in silence. I could not see her internal bruises, her inner pain. When she became diagnosed, I could not fathom what she was undergoing. I was not there for the many moments she stood in dismay, quietly, being lectured by some unknowing person for parking in a handicapped spot multiple times a month. By undertaking this research, I wish to promote compassion for EDS sufferers, dispel some of the ignorance surrounding invisible disabilities and disorders, and encourage compassion for the hurt EDSers carry around silently, daily. Hopefully, we can all find ways to help EDSers, and others with rare disorders, to heal and
Hypermobility-Ehlers Danlos Syndrome (type III) was inherited by my mom and sister. The chronic pain is persistent, unyielding, disabling and affects almost every aspect of their lives. Throughout this time I have seen how they have used sensory art therapies, such as art and music, to cope both actively and passively with the symptoms of this disorder. Music has allowed my sister to recover faster from panic attacks, distracts her from the intense pain she experiences when she is confined to bed because of dislocations. She listens to music 24/7: it helps her remain positive. Throughout many sleepless nights she sketches and listens. Many people with EDS, including my sister, have suffered due to the lack of awareness by medical …show more content…
EDS is so rarely diagnosed that it is unique to meet another person with it. It is so rare that there is not even a TED talk about it, and doctors have to google it before they treat their patient. It is so rare that most people have never heard of it and there has not been more than one collective subjective study for EDS patients. Dr. Forest Tennant stated the “more painful than the pain experienced by a cancer patient undergoing Chemotherapy”. The pain in EDS may occasionally be classified as intractable pain: pain that may cause reclustity, and is not relieved by medical procedures or interventions. Yet, because these people look normal---they are silenced, misdiagnosed, neglected, unheard, marginalized, and often told their gentic disorder is “all in their head”. Therefore I have taken an eclectic approach to my data extraction. For example, My sister told me her favorite song is James Arthur’s Recovery. For her, the verses audiate her emotions surrounding EDS and relate the lack of perception and isolation within the EDS …show more content…
Growing up, my sister would be on and off of crutches, become nauseous when exposed to bright lights or gum chewing, and tire at a rapid rate. I did not understand that she suffered in silence. I could not see her internal bruises, her inner pain. When she became diagnosed, I could not fathom what she was undergoing. I was not there for the many moments she stood in dismay, quietly, being lectured by some unknowing person for parking in a handicapped spot multiple times a month. By undertaking this research, I wish to promote compassion for EDS sufferers, dispel some of the ignorance surrounding invisible disabilities and disorders, and encourage compassion for the hurt EDSers carry around silently, daily. Hopefully, we can all find ways to help EDSers, and others with rare disorders, to heal and