Remembering Stephanie Wicklund

Amy Wicklund from Jackson, MI shares her daughter’s journey with lupus.

Stephanie’s Story:

My daughter was diagnosed with lupus when she was 10 and she passed away when she was 29. Right before she was diagnosed, it was required for her to have a physical before attending Girl Scout Camp. The urine testing showed high levels of protein. We were sent to Mott's Children's Hospital for a kidney biopsy. A one-night stay turned into 4. One of the doctors saw a butterfly rash on her face, and lupus was diagnosed. I remember this being a very confusing time for us. At that time, we had never heard of lupus. In the hospital, she was started on steroids immediately. When she left the hospital, she was prescribed so many pills to be taken at different times of the day. We started every three months "clinic" appointments. In these appointments, she saw both a nephrologist and a rheumatologist. To say this was overwhelming was an understatement. I don't remember being offered any resources to help us understand everything that was going on. The clinic appointments were an hour of listening to her being told to lose weight and exercise. Later, after she passed, I learned that adult Stephanie refused to visit doctors because of these clinic appointments. She wasn't taking the medications. She wasn't seeing any doctors. One night in June 2022, I received a phone call from Stephanie. I'm the last person she called. In the hospital, they told me that she had a brain bleed in the stem that was inoperable. She never woke again. My husband and I had to make the decision to remove her from life support measures. In the weeks that followed, I found so much online. Signs that I had seen, but hadn't attributed to her kidneys failing. As a parent, I was ravaged with grief and guilt that I wasn't able to do more for my daughter. Over and over, people tell me that it wasn't my fault. She was an adult. I don't wish this experience on anyone. Everything is so much quieter without Stephanie.

What is one piece of advice you would give to someone who is newly diagnosed?: Look for resources to help you. Find people to talk to.

What is one misconception you wish you could change about lupus?: I don't believe that people understand lupus.

You can read more about Stephanie here.

Amy Wicklund is donating a portion of her Pampered Chef sales for the month of August in loving memory of her daughter.