Well Said.

Check out this blog, In Sickness and in Health. She also has Scleroderma and is a potential candidate for a lung transplant. This disease affects each person differently and when I find a blog I like I want to tell my readers about it.

The hardest part about having Scleroderma, Sarcoidosis and any chronic disease is sometimes the cure is worse than the disease. It's frustrating. My opinion is; don't I want these treatments while I am feeling strong and healthy? The answer is no. Six years ago, my rheumatologist at the VA and I both agreed I may be a candidate for a stem cell transplant. He no longer had any idea what to do with me and recommended me to a great doctor at UCLA. My doc at UCLA told me I was too healthy for such a dangerous treatment. The risks outweighed the benefits. At the time, I was upset but it was a very smart move.

As long I can remember, I have had difficulty breathing. I was finally diagnosed with Sarcoidosis in 2007. All of my symptoms had not yet manifested and I am sure there’s more to come. It almost feels like Christmas, but it’s more like riding a rollercoaster blindfolded. So, I'll continue to ride this thing until I am sick enough. The longer I wait, the safer the treatment may be or maybe they'll come up with something entirely different. Patience. And I want it now damnit!

Scleroderma Research Foundation
Scleroderma Foundation
Foundation for Sarcoidosis Research

Cure vs Treatment. Question and comments.
Revisiting the relationship between baseline risk and risk under treatment. 2009 (Wang, Boisell and Nony.)