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My name is Sue, and I’m fundraising for urgent medical and surgical costs due to a severe case of Ehlers Danlos Syndrome (EDS). For years, I didn’t know that all my health issues were connected, and by the time I was finally diagnosed three years ago, my body had already been through so much. Now, at less than 35 years old, I’m living with multiple lifelong diagnoses—gastroparesis, MALS, major degenerative disc disorder, POTS, Dysautonomia, and more. The pain and challenges from these conditions are constant, and my health continues to decline.
Right now, I’m preparing for a complex surgery for MALS, a rare syndrome that causes intense pain with eating and extreme nausea. During this surgery, I’ll also be treated for a recurrent hiatal hernia, which has already failed two previous surgeries, and have scar tissue removed that accumulates due to my EDS. The recovery will keep me in bed for at least two months, and the impact on my family is overwhelming. As a parent, it’s hard to know that my absence will affect every part of our lives.
The funds raised will help cover the out-of-pocket costs of surgery, as well as essential recovery needs like a medical grade pillow support system, shower chair, handrails, and a medical tracking device to monitor my health. We also need help with the cost of medications that insurance no longer covers. These expenses are daunting, especially as we try to make ends meet, but this surgery is necessary to give me back some functionality and hope for the future.
This holiday season, I know it’s hard to be asked to give even more, but I’m reaching out to family, friends, and even strangers because we can’t do this alone. Losing my health has meant losing so many dreams, but I’m determined to find a version of myself that can still live, love, and be there for my family and friends. My surgery is December 8th, and I’ll be sharing updates throughout my recovery. I want to show others with my conditions that life can get better, and that we are worth fighting for. Thank you for considering helping me—your support truly means the world to me.
Right now, I’m preparing for a complex surgery for MALS, a rare syndrome that causes intense pain with eating and extreme nausea. During this surgery, I’ll also be treated for a recurrent hiatal hernia, which has already failed two previous surgeries, and have scar tissue removed that accumulates due to my EDS. The recovery will keep me in bed for at least two months, and the impact on my family is overwhelming. As a parent, it’s hard to know that my absence will affect every part of our lives.
The funds raised will help cover the out-of-pocket costs of surgery, as well as essential recovery needs like a medical grade pillow support system, shower chair, handrails, and a medical tracking device to monitor my health. We also need help with the cost of medications that insurance no longer covers. These expenses are daunting, especially as we try to make ends meet, but this surgery is necessary to give me back some functionality and hope for the future.
This holiday season, I know it’s hard to be asked to give even more, but I’m reaching out to family, friends, and even strangers because we can’t do this alone. Losing my health has meant losing so many dreams, but I’m determined to find a version of myself that can still live, love, and be there for my family and friends. My surgery is December 8th, and I’ll be sharing updates throughout my recovery. I want to show others with my conditions that life can get better, and that we are worth fighting for. Thank you for considering helping me—your support truly means the world to me.