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Editor's note: The following was written by Olivia Thomas, a Mayo Clinic Employee, with permission from the featured family. Olivia wrote the story through the eyes of the patient's young daughter.
My name is Luna! I live in Japan, and I am 2 years old. I want to tell you about my family and this place I keep hearing that we are going to visit.
My family includes Elizabeth and Shinji, but I call them Mom and Dad. Mom has been a professional musician and dancer, so, of course, Mom and I like to dance and sing songs. Sometimes I even sing to our kitty cat, Budou. My dad makes me happy, especially whenever he reads to me. I can tell by the way my parents treat me that they really cherish our time together.
The other day I saw Mom writing a note, and then she began reading it to me, telling me we are going to see the people who made it possible for me to have the life I do today. I know that it must be important because I saw tears falling from her eyes when she was writing it.
Dear Mayo Clinic,
For many years and from a young age, I knew within my own heart that something was wrong with me, medically speaking. I would bruise easily, dislocate joints, have high-level pain and endure severe migraines. I had more good days than bad, but was always grateful just to be alive. At one point, I suffered blood clots in my hands, and the doctor treated me with aspirin despite the bleeding, bruising throughout my body. The doctor said I was fine and there was no conclusion as to why the clots happened. It seemed to be an endless pattern where I would go to many doctors, they would view all the symptoms as independent problems, and then could not uncover the cause. I spent a bit of time in the hospital, too.
In 2007, I was in my early 20s when I met an internal medicine doctor who said it wasn't likely that I had many different conditions but rather one rather serious problem with many symptoms. He referred me to a hematologist at Emory Medical in Atlanta. The doctor came into the exam room with a textbook and said, "I think I know what you have." This was the first time I heard of Ehlers-Danlos Syndrome (also known as EDS), which is a rare, inherited condition that affects connective tissue. She was hesitant to officially diagnose me because she lacked experience with the condition.
I was then referred Mayo Clinic in Jacksonville, Florida, which had an Ehlers-Danlos Syndrome Clinic. I was already familiar with it because an extended family member had gone there for care. I met with Dr. Benjamin Wang, a rheumatologist who ordered some tests and then confirmed I had Ehlers-Danlos Type 3.
After 22 years of searching, I had an answer. It was such a relief to have the information and the support of an expert who was familiar with what ailed me. At Mayo Clinic, I felt validated, seen and heard. I felt tremendously grateful for this newfound sense of security. I knew I was in capable and trustworthy hands. With the help of Dr. Wang and his team, I learned how to cope with my challenges and was able to move forward with life.
In late April 2020, I moved to Japan, where my fiance was from. Two months later, in June, I got married and quickly became pregnant, although I did not realize it until several weeks later. I had been told that due to EDS, a pregnancy would likely be impossible but even more unlikely since I also suffered from severe endometriosis and ovarian cysts, which meant I likely couldn't get pregnant. I was acutely aware that a pregnancy could come with severe complications and not result in a living child. When I became pregnant, it was the most shocking thing that has ever happened to me. I had life-altering questions. I needed a trusted doctor to turn to for the answers. Although it had been 10 years since my last visit at Mayo Clinic, I knew that I could trust their expertise.
Though living across the globe, I was able to connect with Dr. Dacre Knight, a member of the EDS Clinic in Jacksonville. As we spoke via video about my situation, I felt a sense of calm. I immediately felt very safe with Dr. Knight, who emphasized his belief that despite the risks, I could have a successful pregnancy. That was the greatest gift anyone had ever given me. For the first time since I found out I was pregnant, I felt like a future was possible.
I had tremendous support from my family throughout the pregnancy. And even though Dr. Knight and his team were on the other side of the world, they were always with me. Throughout my pregnancy, Dr. Knight and Jessica, one of the nurses, maintained contact, despite a 13-hour time zone difference, and continued to advise and support me through the difficulties of my pregnancy. After a progressive labor, on Feb. 28, 2021, we welcomed our daughter Luna into the world, and I knew everyone was celebrating with me!
The entire team at Mayo Clinic is of truly exceptional quality. I cannot even begin to describe how grateful I am to Mayo Clinic and the people who work there. They change people’s worlds and save lives, and probably don't even fathom the extent of it. They work so hard all day, every day and likely have no comprehension of the impact they have. For the individual who receives their care, it means everything. In my case, it reshaped my world and made a family that is forever grateful.
When we can travel easily, I want to bring Luna to Florida for a visit. It is important for the Mayo team to see the beautiful and vibrant life that they helped saved. Luna’s enthusiasm and excitement about life never fades. I have become a much happier person for sharing this life with her.
Mom says we’re going to travel soon. I’ll look forward to meeting these people she keeps mentioning. Thank you for reading my mom’s note! I hope that it helped you to learn more about what an amazing family I have.
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