Peter Anthony Falcone

How Scleroderma Has Changed My Life

9 years ago I was diagnosed with scleroderma. At just 10 years old I found myself struck with a rare disease that only affects 30 people per million population per year. I did not know how to react or how to handle this kind of news. All I knew is that my life had changed and that I was going to have to learn to live with this new part of my life.

Scleroderma, a rare and often misunderstood autoimmune disease, has irrevocably altered the course of my life. It not only left a physical mark on my health but has also affected my mental and emotional health as well. This essay will highlight challenges, transformations, and experiences both good and bad that have emerged from this journey.

What is scleroderma? Scleroderma is a chronic autoimmune disease that affects the connective tissue. In my case, it has primarily targeted my skin, leading to tightness, discoloration, and a small indentation/lesion on the middle of my forehead. However, scleroderma is not just limited to skin; rather it can affect internal organs, leading to a range of even more complications. Thankfully for me and my case, mine has been localized to the skin on my head. My journey began 9 years ago when I was diagnosed and the initial period of uncertainty marked the beginning of my life-altering experience of living with scleroderma.

The most visible change brought about by scleroderma is the transformation of my physical appearance. Especially because my affected area is my forehead. It began as a long bright red line from my hairline down to the top of my eyebrows accompanied by a dent. This caused me to worry about my self image and I became extremely self conscious of my appearance from this point forward. I did not know how the other kids in my school would react, my friends, my family, it was all so uncertain. I began to grow out my hair so that my curls would cover more of my forehead.
This also led to me having to begin getting blood work every three months. That was honestly quite a scary experience for me when I first started because it was my first time getting bloodwork and I knew it was going to become a frequent event in my life. Now, at this point of my life, I am very used to the bloodwork and even know the nurses at the Cleveland Clinic by name who take my bloodwork.

The reason I had to do so much blood work so frequently was because this autoimmune disease caused me to need to start medications. The first of these medications was Methotrexate and it made me very sick at the beginning. I also had to change my entire diet and avoid certain foods and types of foods for a long time. It was not enjoyable as a kid to have to always be watching out for what I was eating and drinking and if I was feeling sick or not, instead of just being able to enjoy the care-free lifestyle most young children enjoy.

My journey with scleroderma has also affected my mental and emotional health. It has been a relentless test of my resilience. The uncertainty surrounding the course of the disease and lack of a definitive cure/timeline was pretty overwhelming. There have been a lot of moments of frustration and despair along my journey. Mostly, these came when I was on Methotrexate because I would make progress at higher dosages, but the moment we tried to lower the dosage or completely take me off of the medication, I would regress almost instantly. The line on my forehead would get more pronounced in color and size.

My mom has been my main pillar of support, offering a lot of emotional sustenance. There is a lot of importance in communication and understanding, and has led to stronger connections with those who stand by me in this journey. I am beyond grateful for Dr. Joan Tamburro who I began this journey with and was treated by until I was 17. I am also extremely grateful to Dr. Kathryn Torok, the Director of the Pediatric Scleroderma Clinic at UPMC Children’s hospital in Pittsburgh who has taken great care of me these last 2 years and has led to seeing the most improvement in just two years then we had seen in the previous seven.

As I am from Ohio, it is not always easy getting to Pittsburgh, especially now that I am a collegiate athlete living out of state. It is definitely a hassle and inconvenient to both my mom and I because doctor’s appointments now become multiple day trips. On the bright side, Dr. Torok and her team take great care of us and always provide solutions to any outside factors so that all my appointments can be kept intact.

Scleroderma has prompted a reevaluation of some of my priorities in life. I have learned to appreciate the value of each day and cherish the moments of relative normalcy. The uncertainty surrounding my disease does not affect me the same way any more. I trust my doctors and know that I am in good hands. I just focus on living my life to the fullest every day and have realized that health is wealth and I am still in great health granted many people’s situations.

In conclusion, living with scleroderma has transformed my life in multiple ways. Physically, the disease has altered my appearance and self image. Emotionally, it has tested my mental fortitude through self image and relationships and uncertainty. Scleroderma has forced me to reevaluate my priorities, and become someone that can still accomplish all their dreams even with a rare disease that affects them 24/7. Through it all, I have discovered strength, resilience, and a sense of purpose that have all been strengthened through this experience. While my autoimmune disease has presented some pretty intense challenges, it has also opened doors to new opportunities, relationships, and experiences and have allowed me to deeper understand what it means to truly live the life I have been given.