Saturday, March 26, 2016

2016 Walk to Cure Arthritis

     I am thrilled and honored to announce that I am the Young Adult Honoree for the 2016 Triangle Walk to Cure Arthritis, sponsored by the Arthritis Foundation! A copy of my little arthritis-bio can be found below or by clicking here.

Photo credit: Alana Fiordalisi (thank you!)

 
            
 MEET OUR YOUNG 
ADULT HONOREE: 
RACHEL SAULS 

Rachel will be 17-years-old this May, but was only 11-years-old when she first began experiencing symptoms of juvenile rheumatoid arthritis (JRA). She knew something was wrong when her elbow was constantly aching, and after bouncing through a variety of specialists and dealing with the physical and emotional consequences of misdiagnoses, she found herself with a variety of Arthritis Foundation pamphlets explaining juvenile arthritis, a term that was admittedly foreign to her at the time. Rachel’s rheumatologist explained that her joints were like rivers instead of canyons; ultrasounds on her elbows, knees, and ankles confirmed the presence of fluid and swelling that was causing her pain.

Rachel is still in the process of trying a variety of treatments for her arthritis, from NSAIDs to DMARDs to biologics. During the early years of her disease, she went to physical therapy often because the swelling in her joints resulted in muscle stiffness,greatly limiting her mobility and range of motion. She is currently managing symptoms with a DMARD and a biologic, but is not in remission. She still has bad days in which activities like writing and walking are extremely difficult.

One of Rachel’s biggest challenges as a young person living with arthritis is explaining to friends and teachers that she has a disease that is typically misunderstood as exclusive to older people. The invisibility of her illness and perceived mildness of it has often left her searching for validity and upset at the lack of understanding. She has trouble asking for help without feeling like a burden, and frequently struggles to verbalize exactly how she is feeling during flares.

Rachel wants people to know that, If you are currently living with a form of arthritis or another autoimmune illness, reaching out for help, whether it is physical or emotional, is not only a good idea, it is essential to living in a sustainable way and preserving energy.

Even though these challenges exist, Rachel is constantly motivated and inspired by people she meets through the Arthritis Foundation and through the chronic illness community. She has learned to be an empathetic advocate, willing to stick up for herself and serve as a resource to other patients. As part of her advocacy and journey toward being more open about her arthritis, she started a blog that can be found at www.rachelplusrheum.com. She is learning that sharing both the beauty and pain of living with JRA is helpful to herself and to others. Most important, she is extremely grateful for people affected by arthritis who have shown her compassion and support as she attempts to navigate this ongoing challenge. 
    As the Young Adult Honoree, I am the captain of a team called "Rachel's Rock Stars" that will be fundraising and attending the walk on April 30th. If you would like to make a donation or join my team, please click here for the appropriate page. My goal is to raise $1,000 to help people like myself dealing with this disease. Finally, I would absolutely love for all of you who live nearby to come out for the walk itself on April 30th. It is guaranteed to be lots of fun and it is a wonderful way to spend a Saturday morning! Additionally, the event is kid- and pet-friendly, plus if you bring your baby or your puppy I will love you forever. Thank you all for your support!

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I love receiving your comments and do my best to respond to them in a timely manner! If you would like to share something more personal, you are welcome to email me at rksauls@live.unc.edu.