As a patient, I don’t need a day to make me aware of scleroderma, but I am glad there is a day proclaimed for scleroderma awareness.
Today, you will read about patients fighting for their lives and treatment. I’m going to do something just a little different: I’m going to show you what I can do because of treatment available for scleroderma patients.
I am here because of research and exceptional care.
I also am here because I have learned to be my own best advocate.
I am also still here because scleroderma is not my life.
Instead of providing a list of how it’s not, here are some pictures of me fighting. This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.
If you have scleroderma, remind yourself it does not have you. If you don’t have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.
I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease. Twenty years ago, I did not think I would still be here. I certainly didn’t think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.
What would I say to someone newly diagnosed with scleroderma today?
I would say: Expect the unexpected. Don’t give up even when it feels hopeless. Get treatment for depression. Exercise.
Scleroderma is going to knock you on your ass. It may take a while, but you can get back up. There are no guarantees, only hope. Keep going. Get back up after you get knocked down, and get your hair pulled every now and then.
A very special thank you to West Coast Krav Maga, and Kevin!