Welcome 

Happy you found me! I am Holly, here to share my story about living with Gorham-Stout Disease. My wise son told me it is a part of the healing process. I am now confident and comfortable with myself in doing so. GSD is an extremely rare disease with only about 300 cases reported worldwide. Better known as Vanishing Bone Disease that affects the Lymphatic System. I was misdiagnosed with Follicular Lymphoma, a type of cancer and having an infectious disease. I have had many surgeries and will continue to need reconstructive surgeries. This disease has taken my bottom teeth, my jaw twice now, and has robbed me of my enjoyment to eat and speak. I have had to learn how to walk, talk, and swallow. I constantly battled trismus and almost had my jaw locked permanently. It has been extremely painful and exhausting, but I continue to persevere.  With a positive attitude and faith anything is possible. 

  

Through this journey I have been ignored and dismissed by medical professionals. I felt alone. I have heard doctors, and specialists refer to me as a medical mystery. I have been prescribed many antibiotics, steroids, and pain killers. Nothing worked. I became dependent on opioids, and depressed. I continued to search for any doctor that would take me seriously. I had almost lost all hope and was prepared to die.  

  

I have been desperately searching for my team of winners! Anyone wanting to support or help please do so by sharing. I hope my story can save someone from having to endure the same frustrating struggle. Medical students, doctors and specialists all especially need to know about this disease.  I stress the importance of knowledge, compassion, patience, kindness, and love needed during this time. Although this is my personal experience, I hope to promote awareness and connection about this life-threatening disease as well as help understanding people living with a rare disease.  

  

Thanks for visiting my page! 

  

Holly 

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