Welcome to this week’s Spoonie Spotlight. Today I’m featuring Stefanie! Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks.) If you would like to participate, fill out the form!
What’s your diagnosis?
Juvenile Rheumatoid Arthritis
When were you diagnosed?
When I was 13 months old
How long have you had symptoms?
I have had JRA my entire life.
Have you been limited in any way from your illness? If so, how?
I have had to adapt my life in many ways but I do not let it limit me. One example of how I have been creative to overcome the challenges of JRA is when I learned how to ski in an Adaptive Sports Program. I physically would not have been able to participate in a typically ski school experience. After learning how to ski through this program, I then became an instructor and now frequently teach other children and adults with disabilities how to ski or snowboard.
What’s your story?
I was diagnosed with JRA at 13 months old. I also have battled with Uveitis and Glaucoma as a result of my JRA. Living with JRA and my life are so intertwined, it is hard to separate them. Although, having JRA has brought many challenges to my life such as 4 eye surgeries, knee surgeries, countless medications and therapy appointments, I am not sure I would be who I am today without it.
How has your illness changed your life?
I have had JRA my entire life, therefore I find it hard to determine how my life would be without. It has provided me with a unique perspective in life to appreciate every moment and not stress about the smaller things. It has led me to participate in many volunteer opportunities and meet some amazing people (including my husband!). It has also led me to pursue a career as an occupational therapist to help other children with disabilities.
What are your goals for the future? (Not related to your health)
I would like to continue to further my occupational therapy career. I would like to become more involved in advocacy for young adults with JRA and continue to develop my blog.
What are your goals for the future? (Health related)
I would like to eat healthier and exercise more!
Do you consider yourself handicapped or disabled? Why or why not?
I do not consider myself disabled and was recently discussing how our society is so focused on what people can not do, that we need to change our language and focus more on people’s “Abilities” instead of their “Disabilities.” Personally, I am able to work full-time, be a wife, friend, skier and I have JRA and these are some of my abilities. There are some things that I can not do as well such as run long distances, jump very high or see well without glasses due to eye disease but instead I focus on the abilities I have.
What would you like readers to take from your experience?
You never know what life is going to throw at you! Although, having JRA or a chronic illness is challenging and can sometimes just downright stink! It is so important to stay positive and appreciate the life you have been given. I believe having JRA has helped me to be a stronger person, remain positive and have a better outlook on life.
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