A Long Gray Journey to Light With Scleroderma
State: New Jersey
Congressional District: NJ07
Immune Disease, Mental Health, Rare Disease
Issues and Challenges
Amanda has encountered: Rare / Underserved Disease, Invisible Illness
I’m Amanda Lippincott and on the outside I look like a healthy 31 year old. I’m married, expecting our first child in October, and a cat-mom to two orange tabbies. My husband and I love to adventure to Disney and go to hockey games together. You wouldn’t know from the outside but I have a rare incurable autoimmune disease called Scleroderma.
I wake up most days in pain and have to take medicine to stop my body from fighting against itself. My immune system is attacking the connective tissue in my skin and around my internal organs causing swelling in my hands and feet, joint pain, and extremely tight and itchy skin. I’m focusing on advocating for this rare disease to help raise awareness and hopefully one day find a cure.
My journey to diagnosis began in 2018 after I received gastric sleeve surgery. At the time of surgery I was over 350 lbs and had migraines almost daily. I wanted to regain control of my life and felt that surgery was my way to do this. I had recently gotten engaged and I wanted to look and feel my best for my wedding day in 2019. At this point my engagement ring, even in the intense summer heat, always fit my finger. In May of 2019 I woke up one day unable to move my hands because they were so swollen. I felt that if I closed my fingers they would pop open. Even though it was a little early for summer heat, I just thought that maybe I slept wrong. Then I went to put on my engagement ring and I couldn’t fit it over my second knuckle. Even at my heaviest weight in the dead of summer, my ring always fit. Immediately I knew something was wrong and I made an appointment with my primary doctor. He didn’t know what the problem was so he referred me to go see a Rheumatologist. I had my first appointment a month later. Besides the swelling, I started to have joint pain and my skin was becoming tighter. Within 3 months my doctor had diagnosed me with Scleroderma.
I will never forget the day I was diagnosed. The doctor came into the small exam room my mom and I were waiting in. He closed the door and began telling us he had a diagnosis. He sat down and calmly started to explain that in his latest round of bloodwork, he found the markers for a rare disease called Scleroderma. He went on to tell us that Scleroderma was an incurable disease. At that moment, my life came crashing down around me. My mom and I both walked out of the doctor's office in a complete daze, nothing could have prepared us for this outcome. The next few months were non-stop doctor appointments and testing to see how far the disease had progressed. Luckily we caught the Scleroderma in its early stages and I was put on medicine to help alleviate my symptoms. In a few months the medicine helped my skin and joints to get back to how they were. By the time I got married in December 2019, I felt normal again.
Then the pandemic hit, my husband and I had just gotten married and bought a house together. Life was pretty normal until I fell into a deep depression. I didn’t want to do anything but watch TV and lay in bed all day. Even though my body was feeling better, I felt this intense weight on my shoulders. I started going to therapy to try to get myself out of this depression. Speaking with my therapist is when I realized I never properly grieved or was even angry at the fact I had this disease. I started working through my emotions, I let myself feel angry and upset about finally getting my life back after being overweight to only have my life destroyed again by having an incurable rare disease. After coming to terms with my emotions, I felt alone and vulnerable. I realized that mental health was just as valuable as physical health and I needed to take care of myself mentally. That’s when I found the Scleroderma support groups and found people who knew exactly what I had been going through. After a few months I decided to start my own Young Adults support group, to help find other people who may feel the same way I did.
That ignited a fire inside me to want to advocate for Scleroderma awareness. I listened to other stories and I learned that I was one of the lucky ones. For most scleroderma patients it takes years for a diagnosis to occur, my diagnosis took 3 months. At the time I didn’t know anything about this disease or the support groups out there. If I did, I feel like I might have had an easier time with my mental health. I never want someone to feel the same loneliness I felt after I received my diagnosis. I luckily have an amazing support system in my husband and my family but I know not everyone has that. So that is why I am working to raise awareness, provide patient and patient support and hopefully generate government funding to find a cure for Scleroderma.
My Motivation and Inspiration
My motivation is my family. My husband and family are the best support system I could ask for, they always are willing to help me when I'm having a flare or a bad day. I want to find a cure for this disease so I can spend more time with them and less time in doctors offices.