Greta is a student at Calvin University. She has three sisters and enjoys teaching Sunday school, reading, discussing philosophy, and playing games. She began playing the harp when she was four. If she was an ice cream flavor, she would be spiced vanilla because when people first meet her she comes across as quiet and reserved. When you get to know her, her true personality comes out. Greta has a rare disease called hypermobile Ehlers Danlos Syndrome, which is an invisible illness. It took her a while to open up about her story because her doctors did not believe she was ill. She is sharing her experience now so that Ehlers Danlos Syndrome can be better recognized and understood.
Q: Why did you agree to be a part of this project? Why is this important to you?
A: It honestly took a while for me to open up about my story and experiences. For years I was told by doctors that nothing was wrong with me or I was just a hypochondriac. I felt that if the people whose job it was to help me didn’t believe me, why would anyone else. After my diagnosis, I did feel some validation, but I still felt that people wouldn’t take me seriously or they wouldn’t want to hear my story. However, I realized the reason it took me so long to find answers is because EDS is something that most people are completely unaware of. If I didn’t talk about my experiences, I would be allowing EDS to continue to go unrecognized. By telling my story, I can raise awareness and understanding of my condition.
Q: Tell me more about your rare disease and how you would define it?
A: I have hypermobile Ehlers Danlos Syndrome, or hEDS. Ehlers Danlos is a group of connective tissue disorders that effect the makeup of collagen or similar proteins in the body, making the connective tissue weak and stretchy. Connective tissue is found in almost every system in your body, so EDS can affect many things, including your joints, organs, blood vessels, and skin. The most well-known characteristic of EDS is joint hypermobility. For me, this means that I sub lux, or partially dislocate, some of my joints, especially my wrists, fingers, and collar bone. It can also cause things such as chronic pain, chronic fatigue, and dysautonomia. There are 13 known subtypes of EDS, and 12 of them have known genetic variants. The hypermobile type is the only type where the genetic cause is unknown.
Q: What was your diagnoses process like?
A: When I was younger, I had a lot of seemingly small issues. I was constantly rolling my ankles and getting weird injuries, I had a lot of issues with my wrists, and I was always tired and never had any energy. However, my doctors didn’t seem concerned and neither was I. As I got older, I began to develop more and more symptoms. When I would say something to my doctors, they would sweep it under the rug and say that I was fine, that I was normal, and that there was nothing to worry about. For a while, I believed them and just ignored some of the issues that I was having. I remember, when I was around 16 or 17, mentioning to several doctors “hey, my spine and collarbone are almost always uncomfortable and in pain and are continuously cracking, popping, and moving.” And they would look at me and say that oh, its normal for girls your age to pop sometimes, and that there is nothing to worry about. When I was around fifteen, my symptoms were getting worse. I was always exhausted, many days I felt so sick that I had to miss music lessons and ballet rehearsals. I was always dizzy and in pain, and I could feel myself getting weaker. Even then, doctors would tell me that there was nothing wrong. In April of 2019, when I was 18 years old and a senior in high school, my family and I decided that it was time to find answers. I went to a new doctor, told him my story, and asked for answers. After listening to me and doing some tests, he mentioned connective tissue disorders. He mentioned something called Marfan syndrome, another connective tissue disorder, and referred me to a specialist at Mayo. Now, that doesn’t really seem like answers. All he gave was a speculation and a reference to a more qualified physician. But to me, he was giving me the recognition that he believed that something was wrong and the hope that someday I would have a diagnosis. After five months of waiting, I finally got an appointment at Mayo, where they ran tests and told me that they would have my results in 6-9 weeks. This was two weeks before moving from northern Minnesota to Grand Rapids, MI, to begin college at Calvin. In mid-October, after they had reviewed my case, I was basically told that I probably had a connective tissue disorder, but they could not diagnose it. They had mentioned EDS at Mayo, and, after researching it, felt like it explained so many of my issues. We found a doctor who specializes in connective tissues disorders, and, on December 18th, 2019, after telling her my story, I was finally diagnosed with hypermobile Ehlers Danlos Syndrome.
Q: What is the hardest part about your rare disease?
A: EDS is an invisible illness. From the outside, I don’t look sick. Even on my worst days, most people cannot tell a difference. It is hard for people to understand how debilitating it can be when you look fine. This is one of the reasons why awareness is so important. Rare diseases can make you feel isolated when the people around you do not understand the effects of the condition you are living with.
Q: What do you want people to know about you beyond your rare disease?
A: EDS is part of me, but it is not all of me. I would be lying if I said that EDS does not affect how I live my life. It has affected my ability to dance and pursue harp at a high level. Sometimes I do have to say no to hanging out with friends or going to a game. However, it does not control me. I am still able to play harp; I might just have to say no to some opportunities because I am only able to do so much. I might not be able to go to the game, but that doesn’t necessarily mean that I can’t grab lunch. Because of my EDS I have to learn to choose what I can say yes to and what I have to say no to. However, it does not mean that I have to give up my life.
Q: What's your career or what do you hope to do or be in the future?
A: I hope to become a Speech-Language Pathologist. When I was little, I had Childhood Apraxia of Speech, and received speech therapy for many years. Ever since, I have dreamed of becoming a speech therapist myself and helping children unlock their voice, like was done for me many years ago.