REUNITE & CARE FOR DAUGHTER W/ EDS
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My daughter, Kiersten, has a genetic disorder called Ehlers-Danlos Syndrome (EDS). She is 23 years young and suffers from arthritis of the jaw, carpal tunnel syndrome ,tendonitis, and chronic debilitating pain; as well as hypotension and hyperthyroidism. Her joints are unstable and prone to dislocation, especially at night while she is sleeping.
What is EDS? EDS is a group of inherited genetic disorders that decreases the integrity and strength of your joints skin, and connective tissues. It is characterized by heart valve abnormalities, loose, unstable, dislocating joints, slow healing of wounds, frequent injuries and severe chronic pain.There is no cure, only limited treatment of symptoms. Kiersten has the Hypermobility Type EDS. Hypermobile joints cause these chronic, painful dislocations.
She is unable to work as it progresses. She is a brilliant, talented and wonderful human being. She studied Biology for 3 1/2 years. She is an excellent drummer and artist, however the EDS makes that difficult now. She is in need of braces to continue her art, which she makes commissions on, as she is unable to work. Also co-pays and medical expenses are piling up. EDS requires vigilance and constant monitoring including diagnostics, blood work, etc..., for even the slightest change. Vital organs such as the heart and lungs must be routinely monitored.
I have dedicated my life to helping others. I am a caregiver who loves her job and approaches it everyday with kindness, patience and generosity. I was lost for many years and caregiving saved my life. Now it is time for me to take care of her. Her optimism is inspiring.
She is in a temporary living situation in Baltimore. I live in North Carolina. I need to finance a move for me and my 3 loving cats including a moving truck, apartment rental, deposits, and various expenses for 2 months. I am really trying on my own: I am writing a book on my experiences working in assisted living facilities and searching for additional employment. These options , however, will take more time than I have. I need to be there for her now. I intend to spread awareness about EDS and hope that one day a cure will be found. I empathize and pray for those who suffer from this debilitating disorder and hope you are blessed with the love and support you deserve.
PLEASE help me do the greatest thing I could ever do with my life.
Ehlers-Danlos National Foundation
What is EDS? EDS is a group of inherited genetic disorders that decreases the integrity and strength of your joints skin, and connective tissues. It is characterized by heart valve abnormalities, loose, unstable, dislocating joints, slow healing of wounds, frequent injuries and severe chronic pain.There is no cure, only limited treatment of symptoms. Kiersten has the Hypermobility Type EDS. Hypermobile joints cause these chronic, painful dislocations.
She is unable to work as it progresses. She is a brilliant, talented and wonderful human being. She studied Biology for 3 1/2 years. She is an excellent drummer and artist, however the EDS makes that difficult now. She is in need of braces to continue her art, which she makes commissions on, as she is unable to work. Also co-pays and medical expenses are piling up. EDS requires vigilance and constant monitoring including diagnostics, blood work, etc..., for even the slightest change. Vital organs such as the heart and lungs must be routinely monitored.
I have dedicated my life to helping others. I am a caregiver who loves her job and approaches it everyday with kindness, patience and generosity. I was lost for many years and caregiving saved my life. Now it is time for me to take care of her. Her optimism is inspiring.
She is in a temporary living situation in Baltimore. I live in North Carolina. I need to finance a move for me and my 3 loving cats including a moving truck, apartment rental, deposits, and various expenses for 2 months. I am really trying on my own: I am writing a book on my experiences working in assisted living facilities and searching for additional employment. These options , however, will take more time than I have. I need to be there for her now. I intend to spread awareness about EDS and hope that one day a cure will be found. I empathize and pray for those who suffer from this debilitating disorder and hope you are blessed with the love and support you deserve.
PLEASE help me do the greatest thing I could ever do with my life.
Ehlers-Danlos National Foundation
Organizer
Jennifer Gugliuzza
Organizer
Hendersonville, NC
