Bella’s Journey: Arthritis Means a Family Must Adjust to the Disease, Too
Life is full of unexpected twists and, oftentimes, people define ourselves by how they react to these unforeseen moments. Bella Sorensen’s life was drastically altered at the age of 13 when she was originally diagnosed with rheumatoid arthritis. Bella, now 17, lives with arthritis, but, like many children and teens with arthritis, their families must live with the disease too.This is Bella’s story—but it’s also her mother’s story to tell as well.
Dorte Sorensen, recalls a time prior to Bella’s diagnosis, “Four years ago, I would have never imagined I would be here talking about my Bella having this horrible disease in the 8th grade as a 13 year-old.”
Dorte shares Bella’s story, “Her life was turned upside down. One day, she was an actively ranked tennis player, playing 5 times a week, and travelled with her volleyball team. The next day, she could barely stand on her own feet; she could barely get up from her bed to walk to the bathroom.”
Bella felt confused and scared and her family echoed her sentiments. “All of her friends were worrying about boys, make-up and gossip; Bella had to worry about numerous doctor visits, blood work and shots,” Dorte recalled, “Bella, ever since she was a toddler, has always been so brave and, now, she is a teen living with this disease that people think only affects old people.”
Bella’s diagnosis was a puzzle—even to her rheumatologist. There was no clear-cut reasoning to why Bella had RA; “How did she get it? We don’t have any RA in our family,” Dorte pondered, “Why would a healthy girl who is playing sports and living a normal life get diagnosed with RA out of the blue?”
“We still don’t have any answers and we probably will never know,” Dorte was emotional, “Bella is the face of arthritis!”
Originally from Europe, where healthcare and treatment of diseases can be assessed differently than in the United States, Dorte recalled her shock at the sheer volume of medications that were given to Bella to suppress Bella’s rheumatoid arthritis. “It was so overwhelming for me,” Dorte reflected, “I had a huge problem giving my daughter all of these medication—but I also knew that I didn’t have a choice since RA can cause major joint damage and damage to the skin and eyes.”
Dorte still fears for Bella; she worries that the implications of taking so many medications may have adverse effects on Bella’s life. “Will it affect her organs?” Dorte pondered, “Will it increase her chances of getting cancer?”
The uncertainty of Bella’s health alarms Dorte, “Taking these drugs, she is now prone to infections that can be hard to treat […] as a mother trying to protect her child, I want, so badly, to not give her any of it.”
Dorte was resolved, “But, the reality of this disease has hit our family just like it does thousands of other families when they are diagnosed.”
Dorte soberly reflected about Bella’s response to the medication and how Bella’s pain was abated. She reminisced about the heartache she felt as she cleaned up Bella’s hair that had fallen out as a side-effect of one of her medications and how everything, the pain, medication and fatigue, would wear Bella down, “It was very hard watching her go through the pain of the injections and still try to be a tough girl.”
As she spoke about the pain of injections and blood work, Dorte remarked, “I truly admire all these kids that go through the pain of RA on a daily basis—but, also, the pain of the injections. I know that I couldn’t have done it as a 13 year-old.”
Dorte smiled, “Bella would say: “Mom, I have accepted this, why can’t you?’”
The conversation shifted away from treatment to focus more on the effects of Bella’s RA on their family unit. Dorte noted that, step by step, their family learned to live with RA as a new part of their household dynamic, “We decided to change to an anti-inflammatory diet, to take alternative vitamins and use acupuncture in combination with Bella’s medications—all of these things have helped lessen her symptoms a great deal.”
Dorte spoke about Bella’s own desire to advocate on behalf of people living with arthritis and how her daughter writes college essays about RA and the 1.5 million Americans living with the disease. Even though Bella is not playing tennis like she did 4 years ago, she will go to college and she has shifted her focus to being one of the best advocates possible for the Arthritis Foundation as she strives to raise awareness; Dorte added, “For her to have taken this journey and to be involved with the Arthritis Foundation as well as having her own foundation called ‘Bella Blue’—it just warms my heart.”
After reflecting about Bella’s four year journey with RA, Dorte feels good about her daughter’s future and she strongly hopes that a cure will be found. Dorte smiled, “Bella’s weakness has become her greatest strength and that will carry her through the next chapter of her life; she has never complained or cried through any of this—I have,” Dorte mused, “But we can’t wait to see what the next 10 years have in store for us.”