Healthy Living

Student with Juvenile Rheumatoid Arthritis Crowned Miss Teen Tennessee

Student with Juvenile Rheumatoid Arthritis Crowned Miss Teen Tennessee

Photo credit: Oak Ridger

Jordan Elizabeth Henegar, crowned Miss Teen Tennessee US, was diagnosed with JRA at 15 months.

Her mother, Sheri Henager, realized that something was wrong when her daughter stopped walking. Today, Jordan is a senior at Oak Ridge High School, a cheerleader at her school, and a member of the Oak Ridge Youth Leadership Council. She is also a member of the National Honor Society and the Spanish Honor Society. Moreover, Jordan serves as Ambassador to the East Tennessee Children’s Hospital.

In addition to the arthritis, Jordan has Hashimoto’s disease, an autoimmune disease that affects the thyroid gland, as well as Celiac disease, a severe autoimmune disease that causes intolerance to gluten. Her family stated that they could not be more thankful to the medical team at East Tennessee Children’s Hospital, who are helping Jordan receive the care she needs. Jordan goes to the East Tennessee Children’s hospital on a weekly basis in order to receive infusions and she is giving herself injections to help control her arthritis. She is also under the care of Hermine Brunner, a physician at the Cincinnati Children’s Hospital.

Jordan thanks her doctors at East Tennessee Children’s Hospital and Cincinnati Children’s Hospital on a regular basis and she is appreciative to the National Arthritis Foundation for their hard work and care in arthritis research. She stated that without volunteers and donors to both the Children’s Hospitals and Arthritis Foundation, advancements in research and treatment of arthritis would not be possible. To them, Jordan is grateful.

Miss Walker County Outstanding Teen, Gracey Baker

Jordan is merely one example of the teenagers affected by JRA. Gracey Baker, awarded the Miss Walker County Outstanding Teen crown in 2016, was diagnosed with juvenile inflammatory arthritis at the age of 11. “The last three years has been a battle of medications, and she’s been through several rounds of different medications” said Shannon Baker, Gracey’s mother. In addition to her joint pain, Gracey also suffers from uveitis, Temporomandibular joint dysfunction (TMJ) and Sjogren’s syndrome. “Basically, the arthritis is in their eyes. Uveitis can cause glaucoma, cataracts, blindness.... It can happen really fast” said her mother. When Gracey began receiving treatment for JA, the medications suppressed her bone marrow, thus stunting her growth. “She had no growth in three years. She didn’t grow at all, weight, height, nothing. Since being on that medicine, in a year, she’s grown 6 and a half inches, because her joints are finally calming down” said Shannon. Gracey’s sister, Ansley, was also diagnosed with juvenile arthritis at the age of 11. In order to deal with her painful symptoms and control her joint pain, Ansley has injections administered into her hips.

Gracey, with a strong passion for dancing, has never let her disease stop her from pursuing her passion. Kellie Giles, dance instructor at the AAC, remembered when Gracey was too thin and needed to gain more muscle strength. She noted how Gracey worked hard to learn several different forms of dance and always do so with a smile on her face. “It was really hard at first, trying to get her moving again and on her feet. Looking at her now, you would never be able to tell she was sick. She has gained the muscle that she needed, she’s at a healthy state right now. ... She is really strong” said Giles. Giles also recalled one year when Gracey was feeling ill but still got up the will to perform. “She performed The Nutcracker, and she was sick, real sick, but she loved it so much that she wanted to stay in it. She didn’t let it stop her. She continued to perform that show. It’s inspired me in the way of I think I may be going through something, but somebody else is always going through something a little harder than you. And you need to give yourself that mind-set that you just need to not complain and put your mind to it and want it, and be diligent in your actions and just do it” said Giles. Gracey has inspired Gile’s current platform, called “Dancing to the Tune of Miracles”, which is designed to help raise awareness of juvenile arthritis. She hopes to visit neighboring hospitals and educate children who are going through similar experiences as Gracey, about using dance as a form of physical and mental therapy.

Despite her arthritis, when Gracey reached the appropriate age, she decided to apply for the Miss Walker County Outstanding Teen pageant. She hoped that the pageant would be able to give her more confidence in herself, as well as raise JA awareness. “She’s never done interviews, she’s never done onstage questions and as much as she’s danced, she’s never done solo. She had to do all of that. She accomplished a lot of things for herself that day, and she told me, ‘Win or lose, it doesn’t matter. I won myself, because I accomplished all these things that I was terrified of doing’” said her mother Shannon.

Gracey hopes to pursue a career path in neonatology and one day; she plans to work at the Children’s Hospital that has helped her and her sister cope with the physical aspects of JA. “They both make me proud. ... They’re good kids. [Gracey] goes through a lot, but she’s very strong, and she never says ‘I give up.’ She never says ‘I can’t do that because I have this.’ She always says ‘we’ll figure out a way to do that.’ That’s how she’s always been” said Shannon. In her essay for the Miss Walker County Outstanding Teen, Gracey wrote: “Dance is not only my form of physical therapy, but also my passion. It’s the drive I need daily to keep my body active and moving. Some days are not as easy as others but I know that I need to keep moving for my mind, body, and soul. With a chronic disease you can choose to give up or to accept. I choose to accept what obstacles are laid before me and not let this chronic disease define who I am. As a dancer I am able to show no matter what life gives you that with passion anything is possible. ... I can bring more awareness to my chronic disease [as Miss Walker County Outstanding Teen] and prove to other teens no matter what you’re dealt with in life you chose your path.”

Final thoughts

If you are suffering from juvenile arthritis, you are not alone. The above stories are examples of two young women who chose not to let arthritis dictate their lives. They strive not to let arthritis stand in their way of pursing their dreams and do so with positivity. Ashley Boynes-Shuck, a young woman with juvenile arthritis and best known within the arthritis community as “arthritis Ashley”, said it best – “Don’t let arthritis consume you or stand in the way of these dreams. Please. You choose your thoughts. So choose positively. Choose wisely. After all, you have arthritis. It doesn’t have you. So I ask this: don’t bench yourself from the game of life. Be the champion you were meant to be.”

References

http://www.oakridger.com/news/20170710/jordan-henegar-battles-juvenile-rheumatoid-arthritis

http://mountaineagle.com/stories/2016-miss-walker-county-outstanding-teens-life-with-juvenile-arthritis,159

https://arthritisashley.com/2014/06/08/dont-bench-yourself-an-inspiring-juvenile-arthritis-story-by-ashley-boynes-shuck/