The story of Janette
I have Systemic sclerosis, a generalized disorder of small arteries, microvessels and connective tissue, characterized by fibrosis and vascular obliteration in the skin and organs, particularly the lungs, heart, and digestive tract. There are two main subsets of SSc: diffuse cutaneous and limited cutaneous. A third subset of SSc has also been observed, called limited Systemic Sclerosis. I call this the inside disease because when there isn’t any skin involvement, you look normal but your insides don’t; which is my case. I feel very sick however because I look okay on the outside. I feel people don’t believe me nor understand this rare disease, most people I mention it to have never heard of this terrible disease. It is so important we make people aware of all our rare diseases because we need to be understood! I wish all medical professionals would have to take a course on rare diseases. It is not easy having a rare desease and not being understood. In 2020 I saw a doctor 119 times; some of those hospitalizations. I work because I need my insurance and because I need to help my husband with the bills at home, however, I don’t know how much more I can work, every day is a struggle for me to get out of bed and come to work in pain and not feeling well. I won’t lie, there are days when I just want to quit this fight, stop taking medications and stop the costly weekly doctor visits (co-payments once and twice a week add up, not to mention procedures co-payments in the hundreds of dollars) and see what happens. I then see my children and grandkids and then I keep fighting…