Patti Schultz

Meet Patti Schultz from Interlochen, MI. Patti has been diagnosed with lupus for over 30 years.

Patti’s Journey with Lupus:

I was initially diagnosed with Mixed Connective Tissue Disease (MCTD), with features of rheumatoid arthritis (RA), dermatomyositis, scleroderma and lupus, along with Raynaud’s phenomenon. Three years later, I met the diagnostic criteria for systemic lupus erythematosus (SLE), and my diagnosis changed from MCTD to lupus.

My initial symptoms included swollen joints, extreme fatigue, muscle pain and a facial rash. Today, my lupus symptoms include fatigue, rashes and oral ulcers that come and go, along with chronic bone pain.

Over the years, lupus has affected nearly every organ system in my body. In 2013, lupus caused severe kidney damage and eventual kidney failure, which led to a kidney transplant. The transplant gave me a second chance at life and the medications required to protect it have made living with lupus somewhat more manageable.

But lupus never goes away. Even on my best days, I live with bone pain from osteonecrosis, fatigue and the constant uncertainty of what tomorrow will bring.

Lupus has taken so much from me. I lost the career I loved. I lost the ability to make plans freely, without worrying that a flare, worsening symptoms or an infection will force me to cancel. I lost the sense of security I once had in my own body—and the identity that comes with feeling healthy, capable and independent.

What's one piece of advice you would give to someone who is newly diagnosed?: Learn to understand your labs and keep good records.

What is one misconception you wish you could change about lupus?: That there is no cure yet!!

What brings you joy?: Family time and crafting card and board games.