Scleroderma is an autoimmune disease that affects close to 300,000 people worldwide. It attacks the body's immune system, killing the healthy cells thinking they are enemies. When you have scleroderma, your skin gradually tightens and thickens or hardens. It can't stretch like it used to, causing fibrosis or scarring involving internal organs like the heart, lungs, and esophagus.
At this time, there is no cure for scleroderma; there isn’t an official known origin. Scleroderma can also constrict or narrow tiny blood vessels, causing poor circulation and vascular issues in the body.
If you had asked me 22 years ago what scleroderma was, I would have looked at you blankly. Little did I know that 11-letter word would change my entire life in the blink of an eye. I knew less than nothing about a disease that would overtake my body at the age of 19. Changing my physicality, emotions, and relationships, twisting my whole life into a knot, and leaving me to find a way back to myself without a map.
In my late teens, I worked at a nursing home full-time while attending college to become a Registered Nurse. To call me busy would have been an understatement; I couldn’t tell you which way I was coming or going. But I enjoyed being active and having a purpose. Six months before my 19th birthday I started to experience unfamiliar pain in my wrists and elbows. My fingers were always swollen, puffy, and extremely sensitive to temperature and touch. At first, I ignored it, trying to push through the pain and discomfort, but as the weeks added on the pain increased until I started to miss work and school, which was unacceptable for me. O knew that I needed to find some form of relief.
I went to see an orthopedic doctor two weeks after my 19th birthday who diagnosed me with a disease I had never heard of called scleroderma. Looking back now, I was fortunate to have been swiftly diagnosed. Throughout the years, I have heard whispers of other individuals living with scleroderma going undiagnosed for years. However, the prompt diagnosis didn’t make the experience any less confusing and scary. The doctor I saw offered three words: “You have scleroderma,” and I looked at him with a blank stare. I had no idea what that was or even how to spell it. He advised me to keep my affairs in order and work for as long as possible because there was no cure. I left that office numb, trying to wrap my head around what had just happened to me.
I will admit the three years after my initial diagnosis was pretty rough. Denial was a week's workweek for me, and I clung to it like a lifeline. I thought that dealing with an incurable disease called for alcohol and staying out until 5 am most nights of the week. I was put on several medications, and at that time, I took them just to appease my parents and siblings, who were really worried about me and my “self-destructive phase.”
Eventually, I came to a crossroads. I was going to potentially have my finger amputated due to one of the many symptoms of scleroderma - poor circulation, which caused digital ulcerated sores to form on most if not all, of my digits and a few of my toes. Those types of sores can be comparable to diabetic patients’ wounds from lack of circulation. They are agonizingly painful, and it takes forever to heal if you are lucky. Facing the reality of possibly losing my entire finger woke me up. I started to take my diagnosis more seriously. This was a good thing because I would face some tough challenges and decisions related to scleroderma along the way. The surgeons were able to save my finger at that time. But over the years, I have dealt with severe wound issues and have toe tips of almost all of my fingers and one toe.
As I became more involved and active in my healthcare, I noticed a distinct lack of specialty care for scleroderma where I lived. I was also beginning to deal with pulmonary fibrosis (scarring of the lungs) and pretty significant acid reflux. I desperately felt like I could benefit from a team of doctors willing to collaborate to treat my issues. However, locally I seemed to be striking out. So I took it upon myself to do my own research and fight for the life I desperately wanted to continue to have.
It took five years, but in 2009 I found a specialty hospital with a collaborative group of doctors willing to treat me cohesively. From that moment on, I was an active contributor to my healthcare team, taking on a leadership style role in my treatment management. I was no longer content to live with the decisions others were making about my health, physical body, or emotional well-being. That was the instant I became an advocate.
Taking on a role of an advocate for myself seemed to be a role I was meant to play. As my symptoms continued to progress, adding
arrhythmia issues in my heart, pulmonary hypertension, and severe skin and joint pain to the list. I leaned on my parents and siblings for support. I also began sharing my story with others, hoping a connection would form. I started a FaceBook page called Staying Alive with Scleroderma and began sharing my experiences dealing with: hospitals, treatments, and medications- I was raw, honest, and real, and the page grew in popularity. Using my voice to speak out about scleroderma helped encourage me to take my act on the road. I began traveling anywhere I could share my insights with the world.
I have worked hard over the last 22 years of my life to fight for my rights as a chronically ill patient. But also, for the rights of all individuals affected by a chronic illness like scleroderma. Even as my body continues to break down with added GI issues, heart fibrosis, and lung progression, I still push myself to educate people about this disease. Scleroderma has taken so much from me. I have literally been sick my entire adult life. I can no longer have my own children due to the medications I need to take to save my life. This disease has beat me down, bruised my soul, and crushed my confidence, and it continues to do it even two decades later. I never knew one word could hold so much power.
Even through it all, I will not stop! I will continue to fight until my last breath leaves my body - fight for awareness, research, sustainable treatments, prescription cost coverage, and educating all physicians and healthcare professionals about scleroderma. I have made my deficits my mission in life, and it has changed everything about how I thought my story would end.
Each person living with this disease wakes up the next morning to fight the same demons they battled the night before, if that isn't brave, then I don't know what is.
If I can be a guiding light of hope for all of those amazing warriors, then I have found my place in this world.
To quote Corita Kent, “Life is a succession of moments; to live each one is to succeed,” and despite this disease, I choose to live each moment of my life at peace.
Written By:
Amy Gietzen
Patient Advocate/Public Speaker Board of Directors Secretary Scleroderma News Columnist
Steffens Foundation P.O. Box 38037 Albany, NY 12203 518-573-0259
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June 2023