April 10, 2013

Guest Blog: For You, Mom

by Jan Angilella

Jan from Cincinnati
My mother was diagnosed with lupus in the 1960s. But it went dormant for many years, with no outward symptoms. It wasn’t until the late 1980s that she started having more serious health issues and then it snowballed. I remember telling friends about the disease and was often met with the question, “What’s lupus?”

When I saw the presentations inside the Help Us Solve the Cruel Mystery™ tour bus last week, I knew that so much progress has already been made just in awareness alone. This is an insidious, mysterious disease that needs more attention and more research to find a cure. That’s why I signed the petition to Congress asking for their support in funding research for a cure as well as safe, tolerable treatments.

I went through it with my Mom. She lived with the swollen joints, the dry eye and then the failed kidneys. I gave her one of mine in 2003 and her life changed after that. But lupus effects stick around. She still had bone issues, her feet were still swollen, she had to watch her diet – too much protein, not enough protein – and there was always fatigue.

I lost my mom in 2011 but her spirit lives on in me. There is a hole in my heart that will never heal, yet I am empowered by her life, her strength. And so I will help solve the cruel mystery that is lupus in any way I can. The bus tour is well done and answers a lot of questions about the disease. Let’s find a cure.

1 comment:

Stephen in Alabama said...

Hey, I just wanted to say thanks for sharing the post. This was very moving, and I can only imagine what it felt like writing this post in honor of your mother. Last year, we actually put together an infographic in honor of Lupus Awareness Month (it was called Get in the Loop for Lupus Awareness)! It had been a little while since I had thought about it, but with May coming up, I was hoping to share it with you.