May 5, 2025
In 2008, I received my diagnosis of scleroderma, but the journey began long before that. I had been experiencing symptoms such as Raynaud’s phenomenon, lung issues, and gastrointestinal problems, which I initially brushed off. Unfortunately, my medical care was not as timely as it should have been. I was first diagnosed with CREST syndrome, but after undergoing blood tests and a scope with Dr. Turnbull, a gastrointestinal specialist, my diagnosis changed. A subsequent CT scan of my lungs ultimately confirmed the presence of scleroderma.
The early phase of living with this condition was marked by a slow and steady decline in my health. By 2021, I faced even more daunting challenges when I was diagnosed with interstitial lung disease (ILD) and pulmonary fibrosis, which has now led me to the critical need for a double lung transplant. Breathing has become increasingly difficult; my oxygen levels drop rapidly when I walk, and I am currently completing evaluations in hopes of receiving this life-saving transplant.
Living with scleroderma presents many challenges, but the most significant for me has been the struggle to breathe. My Raynaud’s symptoms worsen in cold weather, affecting my feet and contributing to intense discomfort. Additionally, my heart rate has been severely affected, leading to troubling tachycardia, while my gastrointestinal issues have left me feeling weak and have resulted in a significant weight loss of 50 pounds in a short time. I feel incredibly thin and fragile.
To those who may not understand scleroderma, I urge you to recognize the emotional and physical toll it takes on individuals. Accept that living with this condition can be incredibly hard, and exercise patience. The pain can be unbearable, and the symptoms often provoke fear. Supporting your loved ones is essential; while we may put on a brave face, many of us are silently suffering inside.
Reflecting on my journey, I realize that one of my biggest challenges has been the lack of support until recently. Thankfully, the transplant team has been a beacon of hope for me. I must also highlight Dr. Sarah McLean, who spoke at the recent conference in Newfoundland. She has been the most supportive doctor I have ever had, demonstrating a deep understanding of how scleroderma affects my lungs and overall health. Additionally, Scleroderma Atlantic has proven to be an amazing support network, providing the encouragement I desperately need.
