Scleroderma...
Most people haven't heard of it. Of those that have, many don't know what it is. Those that know what it is have experienced something in their lifetime that I wouldn't wish on anyone.
June is Scleroderma Awareness Month. Scleroderma is an auto immune disease that affects a very few number of people. While classified as an auto immune rheumatic disease, it can be more accurately described as a chronic connective tissue disease. It can affect skin, organs and blood. It's similar to/in the same family as lupus, rheumatoid arthritis, and fibromyalgia.
While I'm choosing not to dive deep into what this disease is, you can find more information at scleroderma.org, if you wish... I hope you look into it.
I'm simply here to raise awareness, to talk about it, to help people understand. This disease, well, it's horrible. At a mere seven years old I watched it take my mom's life. She fought long and hard but it didn't stop the inevitable. You see, there isn't cure. Eleven years ago when it took my mom's life, there really wasn't any treatment.
Treatment is advancing. That's great... but it doesn't take away the pain. The joint pain, the fatigue, the heart ache of losing a loved one, the fear of leaving this beautiful planet, the hard conversations. All of that will remain.
Doctors call this disease rare... and I'm sure it is, I know it is. However, once you meet someone or a family member of someone who has this disease, it is no longer rare. You become perplexed at the symptoms and how little we know about this thing... this "skin-hardening" disease.
I guess I'm here to say that if you've been affected by this, I'm here for you. I love you. I support you. I'm here for you to cry to. I'm here if you need to throw eggs at something because you're angry. More than that, I'm asking everyone to be "that" person. Be the one that loves unconditionally when you hear of this diagnosis.
As I said previously, I hope and pray you never know someone personally who suffers from this condition. It's ugly. It's painful. It lacks hope. But if you know someone, be the beautiful. Offer hope. Be optimistic. I laugh as I say that because I know the difficulty in it, but I also know the beauty of it. Difficult things are worth doing right... so, do them.
