The story of Holly
In 2020 my medical journey began. A routine dental exam showed a concerning x-ray. They said it’s most likely cancer. I was misdiagnosed with Follicular Lymphoma. I’ve had multiple surgeries and countless ER visits. It was thought I had an Infectious Disease at one point. Then I was labeled a medical mystery. I felt helpless and deformed. My jaw almost locked shut from all the trauma. My health never improved and I was basically dismissed. Besides prescribing me opioids for the pain and useless antibiotics and steroids I felt alone. I was disconnected from my family and depressed. I continued to drive to various ER’s even drove hours away attempting to get a new set of eyes and opinions. I reached out to my Aunt & Uncle who were retired from the medical field and asked them to attend an ENT appointment. We met and came up with a plan. Next morning ENT called to cancel my surgery and said he believed I had a rare disease called Gorham-Stout Disease. He referred me to another closer to my house. None of us had ever heard of this disease. I’ve been obsessed with researching and it is paying off. A local hematologist had agreed to meet with me, and even though he has no experience with this disease agreed to treat me. My throat swelled up with blood and I had drains placed and a feeding tube per my request. I had lost 12 pounds in 5 day and almost gave up. I’m currently under treatment awaiting another major jaw reconstruction. This disease has taken my jaw twice. I hope that by sharing my story others they may not have to endure the same struggles. This disease can impact the quality of your life, but it can never extract the uniqueness of you. Take it one day at a time and just know that you are not alone. We are all stronger than we think. Encouraging thoughts, you are powerful, and you will heal.