Amy Gietzen - phaware® interview 474

Jun 25, 2024

Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determination to be an exception to the prognosis. She emphasizes the importance of education, self-advocacy, and being proactive in managing one's health. 

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My name is Amy Gietzen. I was born and raised in Buffalo, New York. I am, first and foremost, a patient. I was diagnosed with systemic scleroderma in 2001 when I was only 19. Then, a few years later was diagnosed with pulmonary fibrosis. Then, pulmonary hypertension about five years ago. So I've been a patient for the better part of two decades for most of my adult life.

Scleroderma is an autoimmune disease. It's considered rare. It's more common in women than men. But over the years, it has been known to be affected in men, in children. When I was diagnosed 23 years ago, I started to have a lot of fatigue. I was having trouble even waking up after a good eight hours night's sleep. I was having a lot of muscle pain, problems with my fingers, puffy fingers, sensitivity to hot and cold, trouble bending my wrists. At the time, I was working full-time and going to college full-time. I was going to be a nurse, so I was working in a nursing home and I was going to school full-time. I thought, "Well, maybe I'm working too hard, maybe I'm doing too much." My fingers started to turn purple and blue when I would be out in the cold. Then, I started to just feel really sick every morning.

That was about six months of that and then I'd finally realized if something wasn't right. So, I made an appointment with an orthopedic doctor. I don't know why I did that at the time but I did. I went in and he asked me some basic questions, move your wrists up and down, raise your arms behind your back as high as you can, make a fist. All the things that I thought were super easy but I had trouble doing them. He did a couple X-rays of my hands and my back and then he very calmly said, "I think you have this disease called scleroderma. It is a terminal illness. There's no cure. They don't know why you get it.” He looked me straight in the face and said, "I would work as long as you can and get your affairs in order because it's a pretty nasty disease."

I think I was just numb, because I had never heard what scleroderma was. I literally had to have him write it down on a piece of paper and spell it out for me. Looking back now, I was very fortunate to get diagnosed as quickly as I was. I know a lot of other patients can take years. I left the office just in a little bit of shock and disbelief that this was now going to be my life, which I had no idea what the outcome was, because he didn't really tell me what scleroderma was.

After I was diagnosed, I had some blood work done to confirm. I had an ANA (antinuclear antibody) test done, a specific scleroderma test, which is an Scl-70 (topoisomerase I). It's a type of blood work. They were both positive. I did some research. I was a nursing student, so I went into my nursing books and tried to look up stuff. There was maybe one paragraph that said, "Rare illness, unknown origin, no cure, life expectancy, five to 10 years." I think finding that out and just sitting in it when I was 19, I always thought I would be the exception. I didn't feel sick at the time. I felt like I didn't look sick. I was like, "I'm going to be the exception. I'm going to be the one that isn't that sick. I'm going to be the one that beats this," and I kept that. Maybe it was naivete or maybe it was a positive outlook, but I kept that throughout the years.

But as I started to get more symptoms like pulmonary fibrosis, which is the scarring of the lungs, having more difficulty breathing, then having pulmonary hypertension and some heart issues, having to have hand surgery to correct contractures, which are like when your fingers curl in and you can't move them. Losing fingertips due to ulcerated sores. Every time I got knocked down a peg in my confidence I would just inwardly look at myself and be like, "Well, I can wallow in the pity of what my life has become or I can just stand up and move forward with the life that I have and do the best I can with my situation." I've just always felt like there was a purpose for me getting scleroderma. At that time, I didn't know what it was. In fact, I didn't know what it was until probably 10 or 15 years later when I started to do a lot of my advocacy work.

But it was scary because myself and my support system, which was my parents, we just were flying by the seat of our pants and doing everything any doctor would tell us, because we really weren't sure about treatment, about medications, resources. We knew nothing 23 years ago. There wasn't a lot of information out there so I just learned through my lived experiences, whether they were positive or negative. Sometimes it was really rough. So they were pushing clinical research, advocacy and then living a life that is still pretty active in living a good quality of life. My mindset back then was just, I'll be the exception and we'll just ride this ride for as long as I can do it. I am the type of person that I'm going to fight until my last breath because that's just who I am at the core.

There were cracks in the armor, there were times where I just felt like, "I don't want to do this anymore." Scleroderma and pulmonary hypertension and lung disease blew up my entire life. I didn't get to graduate college and become the nurse that I wanted to be. I had to go on disability pretty early on in my adult life, I think I was 23. I was on a lot of medications and went through a lot of medications that ultimately left me without the ability to have my own kids. It was a lot to deal with at a young age. I really leaned on my parents, bless them. They just supported me in any crazy thing I wanted to do. I could have said I wanted to go to Mexico and get some kind of weird treatment and they would've been like, "Yes, let's go." They were very supportive.

But for me, I dove into, I don't want to be treated as these symptoms attack my body. I want to be progressive and aggressive in the way I treat scleroderma, because I want to be that exception. I want to be the one whose story is different. I did so much research. I did almost five years of trying to find a scleroderma specialist in my hometown, a treatment center, resources, anything I could find. I finally came across a doctor in Pittsburgh that was doing some stem cell transplant research. I talked to my parents and I actually talked to my physician locally and he did not want me to go and I was like, "Yeah, we're going. I'm going to go." That trip, even though I wasn't qualified for the transplant because I wasn't sick enough at the time, that trip completely changed the trajectory of my life and my disease, because I found a place where people knew what scleroderma was. Where there was an actual treatment center and doctors collaborated together, like your lung doctor, pulmonologist, cardiologist, rheumatologist, they all spoke together. You saw them all in the same building. It was complete team care and I was at the center of it and they actually took my thoughts, my ideas, and my feelings into consideration. I probably wouldn't be here now if I didn't find them.

About 10 years ago, after being settled in and accepting of what my life is going to be like with scleroderma, I really wanted to find other young adults like myself. I didn't really see any of them on social media, in any of the support groups and things I was going to. I felt like there was a disconnect and there wasn't a lot of resources for young adults living with this disease. I reached out to the National Scleroderma Foundation and said, "Hey, why isn't there any young adult resources? And I would like to do something." So, I started a Facebook support group called Scleroderma Superstarz and within one year it had 5,000 followers.

Then, it just grew into a young adult meetup that is virtual, that is called SYNC. So that's scleroderma young adults needing connection through the National Foundation. That was run by myself but now it's run by two very great young adults. I started to put together panels and webinars all focusing on young adult patients talking about their journey and their story. I think a big part of my journey and I think patients’ journeys needs to be education and resources. I learned a lot through lived experiences, but I also educated myself as much as I could because I think it helps that your own body and you know what you're going through. I wanted to give those tips and tricks to other patients so that they wouldn't feel alone like I did in the beginning of my disease.

I am on the chapter advisory committee of the National Scleroderma Foundation, Tri-State chapter, which is a local chapter out of New York State. I am on their advocacy committee. I am also involved with the Scleroderma Research Foundation. I do a lot of advocacy work and social media stuff for them. My main thing is that I'm an advocate all around. I do a program with the Steffens Scleroderma and Degos Disease Foundation. They're based in Albany. We do an interprofessional education event where we take students rising healthcare professionals of different disciplines like nursing, OT, PT, et cetera. We take patients and we actually train the students by having them interview the patients. So the patients are actually educating the students. I do a whole training program with the patients on how to tell your story, how to focus on the best and maybe worst parts of your journey. I really am fixated with helping patients be educated and be advocates of their own and also guiding patients towards clinical research and participating in clinical trials. That's the basis of who I am as a patient advocate.

I think the message I would give to newly diagnosed PH or scleroderma or any rare disease patient is that education is key. You have to know what it is that is happening to your body. You have to be on top of that so that you're able to tell what your body's going through. I think a lot of times doctors maybe would get sick of me, but I ask a lot of questions and I question a lot of things. I heard once, and it was so profound to me. Somebody said, "No is a full sentence." I think a lot of times we as patients don't use that word. We just say yes to everything because one, we're scared, and two, we think that doctors know all. They don't. They're human just like you and I.

So I think it's okay to say, "No, I don't want to do this treatment right now," or, "No, I'd like to investigate. No, I would like to get a second opinion." I think that's okay. I think it's okay to trust your gut and go with what you feel is right. Ultimately, you're going to be the one living with this disease every day. In the beginning I said yes to a lot of things because I was focused on quantity of life. Now 23 years in, I don't say yes to a lot of things because I'm more focused on my quality of life. I wouldn't have known that if I didn't stay educated in my disease.

My name is Amy Gietzen and I am aware that I am rare.

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