Every year I get a note from the Scleroderma Foundation about Scleroderma Awareness Month. Take the pledge! Tell at least one person about scleroderma! Coerce your friends into joining the walk for the cure later this month.
Piece of cake. I can do that. Hand on to your phones, because here we go.
Scleroderma is a crazy sounding word, isn’t it. It is actually descriptive of the most obvious symptom of the disease: based on Greek words, “sclero” means hard and “derma” means skin. Hard skin. My skin is interesting to say the least. Hard, shiny, speckled with white patches of scaring, tight across my cheekbones and knuckles: kind of typical for the disease.
“It’s just your skin”, I was told by my ex not long after my diagnosis. “It’s not a big deal, right?”
As it turns out, this actually is a big deal. The tissue under attack by the immune system is the connective layer just under the skin. You know, the layer of the skin that produces the collagen that gives skin its stretchiness and cohesiveness. Imagine what would happen if this tissue grew really thick, stiff, and then tightened down so badly that blood circulation was cut off and it became impossible to move correctly at the joints. The skin around your mouth can be too tight for you to open wide at the dentist, you can’t bend over to tie your shoes, and forget turning your neck. If your skin won’t stretch, you are in a fix for sure! Finger tip ulcers are a constant worry, and physical therapy to maintain flexibility becomes part of the daily routine. Or you can knit. Knitting is good for blood circulation and flexibility. 🙂
This same connective tissue is also found throughout the intestinal tract, and in many other organs of the body. The lining of blood vessels also is impacted, and there is a lot of smooth muscle (like the muscles that work in your stomach) damage. Some people with scleroderma will only experience it in their skin, but others will have damage occurring in organ systems of their body. None of this is nice; some people will lose the function of their hands, while others suffer kidney, heart, and lung damage. Intestinal tract damage is almost universal, and some of these complications can be severe. Check out this neat interactive chart of symptoms.
So, what causes scleroderma? The actual answer is… nobody knows. It is an autoimmune disease that is triggered by unknown causes, has no cure, and if left untreated in the systemic form is fatal 50% of the time. Right now there is no drug to directly treat the disease, but there are treatments to help with symptoms and to modify the course of the disease by impairing the immune system. With these drugs survival rates are way up. Seriously, hug the next scientist you come across. I personally plan to throw a bar-b-que for the next one I get my hands on.
As it turns out, this year the month of June arrives at a pivotal time in my scleroderma life. There is so much going on, and so much that I’m thinking about, that I’m gearing up to post a whole series of articles about the complexities of navigating through the world as a chronically ill patient. Seriously. I could write a blog post for each day of the month. My little notebook that I jot ideas for posts in is filling up quickly.
I need a catchy title for the series. It will be about science, biology, medical decisions, and navigating through a world of alternative medicine and treatments. You know, like fake news, but instead we are dealing with fake medicine.
Whatever is a scleroderma girl to do?
Stay tuned. I’m seriously gearing up for this. June is going to be a great month.
Hey, if you want to walk with me for a scleroderma cure, just let me know. 🙂
2 thoughts on “Scleroderma Awareness Month: Hard Word. Harder Disease.”
I am certain being an inspiration for someone else doesn’t come anywhere close to balancing out having to live with this crazy disease, but Marilyn, YOU ARE A HUGE INSPIRATION TO ME!! I learn from your posts about scleroderma and its related conditions, and most of all, I learn from your example. Sometimes, when things are tough, I think, what would Marilyn do at this point? The answer I always come up with is pet the kitties, pick up the knitting, and keep on keeping on. Thank you so much for sharing your journey (and your kitties and knitting!) here on your blog. ❤️
You are so welcome. I try for peace, courage and grace as i keep rolling with the punches. No sense wasting energy on something i can’t change. I often ask myself what my mom would do… She was such a strong person who was the best example ever as she gracefully planned for the end of her life as she dealt with terminal cancer. If she could do that, I can do anything. 🙂