I was diagnosed in March of 2021 and it’s changed our lives in ways I would never have imagined. I sometimes feel like I talk about it too much. It’s not my intention to make people uncomfortable. I share so publicly because I want people to appreciate that no matter how healthy and fit you are, health and wellness are not a promise. Life can change in an instant and it’s so important to cherish each day.
Currently there are only an estimated 300,000 Americans with this life limiting illness, I am one of them.
Scleroderma?! In simple terms, 'Sclero-' means hard and 'derma' means skin. Sclero + derma = Hardening of Skin. Hardening of the skin is one of the most visible manifestations of the disease. But it often doesn’t just stick to the skin. It can affect internal organs including the heart, lungs, gastrointestinal system, kidneys, muscles and joints.
No two Scleroderma patients are alike, which makes it tricky to diagnose and treat. For me, it has affected my skin (most specifically on my neck, hands and arms.) It causes my body’s vascular system to go off kilter so it doesn’t regulate temperature. I’m always freezing cold , which is why I’ll be fashionable overdressed well into the summer! It’s caused esophageal and gastrointestinal dismotility, which means from the time I swallow to “the end of the cycle”, food doesn’t flow or get digested properly. I’ve lost 30 pounds since I was diagnosed, currently sitting at a breezy 90 pounds. My appetite, which was lost for period, has returned, but food isn’t being digested properly leading to the difficulty in adding on weight and a plethora of other issues. It’s affected my kidneys and my heart, but I’m grateful this has stabilized since last year. It has also affected my mobility, causing me to have to use a cane or other mobility aid to get me where I need to go. I also experience debilitating fatigue.
Scleroderma can also cause “spin off” autoimmune disorders, and a year after being diagnosed with it, I was also diagnosed with Myositis, which causes inflammation and weakness in muscles closest to the trunk of the body, such as the hips, shoulders, and neck. I have severe muscle weakness, and some deterioration in my arms and legs making mobility and just doing life a challenge.
All of this ultimately affected my ability to perform my job, and I was forced to leave my 25 year career in HR in 2022. I filed for Social Security Disability and was approved in less than 3 months, which is lightning fast.
I share all of this not for pity, but to encourage and inspire others who are dealing with difficult things to hold on to hope and faith.
