Category Archives: Stories of Yes

This SJIA Family Thrives in a New Setting

Juvenile idiopathic arthritis (JIA) is the most common type of arthritis in children and teens. Between 10% to 20% of children with JIA have a rare and serious subtype called systemic juvenile idiopathic arthritis (SJIA). Symptoms of this rare disease can include overactivation of a type of immune cells called macrophages (MAS), unremitting fever, liver and spleen enlargement, abnormal bleeding, central nervous system dysfunction and other potential complications. Read about one family’s plight. Continue reading This SJIA Family Thrives in a New Setting

Young Adult Spotlight: Shane Cox – A Voice for the Invisible

A junior at Chico State University in California, Shane Cox might appear like just your average 20-year-old student. But when you take a closer look, you’ll notice something different about him. It’s not the handicapped plate on his pickup truck or the Humira injections he gives himself that really sets Shane apart from his peers. Instead, it’s his dedication to giving other kids with JA hope for their future that really makes him special. It’s his pay-it-forward attitude that made it easy to convince him to be the 2021 National JA Conference chair. And to make it even better, he’s splitting the role with his mom, Jenn.

“I remember being a kid and just feeling invisible,” says Shane. “When my mom found the Arthritis Foundation, and I started seeing that there were other kids like me — who struggled to walk or didn’t know how to even tell people about their disease — I started to come out of my shell. I found a place I belonged, and it helped give me confidence and hope.”

For Shane’s mom, Jenn, she learned firsthand just how difficult it can be to raise a son with a chronic disease. From the years of wrong diagnoses and countless missed school days to the hurtful comments and feelings of exclusion, Jenn has navigated the often rocky road of parenting a child with JA.

“It’s so tough in the beginning,” says Jenn. “We spent so much time just searching for answers. When you finally have them, you feel both relieved and overwhelmed.”

Together, Shane and Jenn are helping other families overcome that initial feeling of worry and fear that comes with a JA diagnosis. In their roles as JA Conference co-chairs, they are each sources of strength for others. Jenn is able to understand how parents are feeling and help reassure them that they are not alone. And for the kids, Shane gets to be the young adult they look up to — feeling hopeful that they, too, will have success, happiness and control over their arthritis.

“I hope that when families see us, they realize that the pain and worry that comes with JA doesn’t have to be the defining thing about them,” says Jenn. “Instead, their diagnosis means they get to be part of a new community, a new family and a new mission.”

 From Parent-Led to Patient-Led
As a mom, Jenn naturally took the lead when it came to Shane’s care. She diligently managed a myriad of pills and medical appointments. She wrote school excuses and made arrangements for makeup tests or missed class work. But as Shane grew into a young adult, managing his disease and all the trials that come with it became less of a tag-team event and more of a solo mission.

“My rheumatologist was actually the one who suggested I begin leading my care instead of my mom,” says Shane. “I was 16 or 17 and I think my doctor knew it would take time to totally transition, so we began the process early.”

Like any mom, Jenn was initially scared at the thought of not being involved in Shane’s health care. But by transitioning slowly, she was able to pull back more easily, one step at a time. And both she and Shane slowly redefined their roles.

“I kept attending appointments until Shane was 18, but he led the discussions with the doctor,” says Jenn. “By the time he was an official adult, he started making his own appointments and going to them alone. It wasn’t easy to let go at first, but I knew I had to. It’s still hard at times, but he’s doing a great job.”

While Shane is now in charge of his own health care, he hasn’t stopped looking to his mom for guidance and support. In fact, he often speaks with her about changes in his care and relies on her input when making decisions.

“It’s a different relationship now, for sure,” says Shane. “But I trust my mom’s advice. She knows a lot more about this world than I do, so I don’t mind asking for her opinion or her help when I need it.”

 Moving Forward Together
Shane and Jenn have been longtime members of the Arthritis Foundation family. For over a decade — since the day Shane was diagnosed — they’ve been familiar faces at camps, conferences, family days and more. As Shane grew up, his relationship with his mom evolved, and his commitment to making the most of life and helping others who are just beginning their journey grew stronger.

Jenn has been Shane’s biggest supporter, helping him learn to take control of his disease and advocate for his health and happiness. As Shane gets ready to celebrate his 21st birthday this summer, his JA diagnosis that brought so many mixed emotions seems like a lifetime ago — but the memories he and his mom have made during his journey will last a lifetime.

“Sure, there are sad moments in our journey,” says Jenn. “But there are so many wonderful ones that we would never have without the Arthritis Foundation. We’ve travelled across the country and met families who have become lifelong friends. And we got to do it together, as a family.”

For Shane, he’s focused on the future. He’ll graduate from college in 2023 as an environmental scientist. And while he knows that he’ll soon transition away from the JA world, he hopes to spend the next couple of years inspiring kids who are just beginning their journey.

“The camps and conferences made me feel like I was just like everyone else,” says Shane. “It’s through these events that I learned to love who I am and to not be embarrassed by my disease. Knowing there are other kids out there who understand what you are going through is life changing. I’m proud to stand up and be that for someone else, because I know how much of an impact it had on me.” — HEIDI BRAGG

 

Teen Fighting JA Says Knowledge Is Power

When Britney Gifford started complaining about aches and inflammation in her arms, legs and knees at the age of 5, her pediatrician assured her parents it was just growing pains — after all, she was one of the tallest kids in her class. As she grew older and showed zero interest in athletics, her parents assumed it was because she just had different hobbies and interests. Continue reading Teen Fighting JA Says Knowledge Is Power

A Mother’s Fight to Free Her Son From Pain

By Kristine DiDesidero, Mount Sinai, New York

I remember the pain as a child. I complained to my mom about pain in my legs. Some nights I cried myself to sleep. My mom took me everywhere for answers. The doctors told her I had growing pains. I am 4 feet, 11 inches, and stopped growing in fifth grade. The reality is that I’ve spent most of my life with what I now know as a variety of autoimmune diseases. Continue reading A Mother’s Fight to Free Her Son From Pain

Teen Memoir: “My Life Because of You”

Below are excerpts from a blog posted on Teen Ink by Lexus Isabel, age 16, of Toledo, Ohio. Her submission about living with childhood arthritis is part of a national site that gives teens the chance to publish creative work and opinions on issues that affect their lives. Soon after it posted, her blog was in the #1 spot for memoirs.

Lexus has supported the Arthritis Foundation for several years, including participation in Walk to Cure Arthritis and Jingle Bell Run. She has also attended JA camps and done media interviews representing the juvenile arthritis community.

Dear Juvenile Rheumatoid Arthritis,

You are the term that has been engraved into my soul since birth. You are genetic and you manipulate my immune system to think there is something wrong with my joints. My immune system attacks me, causing inflammation and pain.

You’re a 7-year-old girl with an innocent face, wincing in pain. You are the smell of antiseptic as she enters the infinite number of hospitals and doctors’ offices. You taste like the toxic medication that chokes the girl twice a day. You feel like the piercing needles penetrating her skin, tears racing down her face, the constant, throbbing pain that stole away her innocence.

Most of all, you are the sounds you cause. You’re the “Mommy, it hurts,” as I scooch down the stairs because I can’t take the pain. You’re a mother screaming, “Tell me what’s wrong with my baby!” You’re the taunts of the children. You are me.

I want to thank you for this. If I was not bound to you, I would not be the person I am. I’ve become a compassionate, stubborn, determined young lady who wears her heart on her sleeve. I want to change the world. I want to help people and see the impact I make. I have this dream because of what you put me through. I don’t want others to be put through this, so I will be a person who guides them through their journey.

Yes, I am grateful to you, but I would never wish you upon someone else. You are genetic. You could have sprung upon one of my sisters. I would gladly balance this burden upon my shoulders for them.

You’ve taught me the importance of family. When you took hold of my life, everyone was scared, especially me. They hid their fear, took my little hands, and we stood against you as a family. When you were finally given a name, my grandmother, Mimmi, dove into research. My aunt helped me with my first injection of medication. My parents were probably hit the hardest by you. I’m so lucky to have them because they have been so supportive along the way.

I questioned my Mimmi about why God would do this to me. I snapped at her, “If God is so great, if he really does love me, then why would he do this to me?” She looked down and grabbed my hand. “Because he knows you are strong enough.” At the time I was just a little girl who had grown up too fast. Now I’m a strong young lady who is still a little scared of the future, but I know I am strong enough. These words have guided me through my life.

Then one day, I heard these words: “I think we can say you are in remission.” I let out a shaky breath and a laugh. My joy spilled out of my eyes. For the first time in years, I felt like I could breathe. I was floating. You were the burden that weighed me down but let me go and allowed me to fly. My parents’ smiles radiated in my direction as we realized all the things that seemed impossible could now be achieved. You are a battle that I will continue to fight because I will always be their little trooper.

You can read the entire blog on Teen Ink.

World Juvenile Arthritis Day: Help Shine a Light on JA

Right now, somewhere nearby, there’s a child who longs to run and play and have the same kind of fun other kids his age are having. Who dreams about being pain-free without having to swallow a cocktail of pills, or feel the sting of injections, or go through hours of infusions at the doctor’s office. A kid who longs for an end to the trial-and-error approach of treating juvenile arthritis (JA) – seeing what works and what doesn’t, often with unpleasant side effects along the way. Continue reading World Juvenile Arthritis Day: Help Shine a Light on JA

Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator

In 2018, the Arthritis Foundation launched its Live Yes! Connect pilot program for parents of children living with juvenile arthritis and other childhood rheumatic disease. In addition to providing emotional and social support, the program offers educational resources and seminars to help parents improve the quality of life for their children. Jessica Ward, whose 11-year-old daughter Mercy was diagnosed with JA at age 4, is the sole parent facilitator for the JA parent group in Columbus, Ohio. We chatted with her to hear her insights about the parent group, including benefits, future plans and the best ways to get involved.   Continue reading Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator

Vieau Arthritis Memoir

Turning Pain into Inspiration: Arthritis Memoir Earns an “A”

The assignment was to write a memoir on the most influential moment in your life. As simple as it sounds, for 16-year-old Kimberly Vieau, the task wasn’t that easy.

“We were supposed to pick a happy memory,” said Kimberly. “But I don’t have many happy memories from my childhood.”
Continue reading Turning Pain into Inspiration: Arthritis Memoir Earns an “A”

Marina Gomez Juvenile Arthritis

From Gymnastics Gold to JA: How Gymnastics & Juvenile Arthritis Changed Marina Gomez’s Life

Marina Gomez of Wichita, KS has been a gymnast since she was just 4-years-old. In 2012 and 2013 she won consecutive gold medals at the Junior Olympic National Championship in competitive trampoline. Marina was looking forward to a long gymnastics career but after she was diagnosed with juvenile arthritis (JA) in 2013, her gymnastics career was cut short.
Continue reading From Gymnastics Gold to JA: How Gymnastics & Juvenile Arthritis Changed Marina Gomez’s Life

Art for Arthritis

Art for Arthritis: Getting Creative in the Fight Against Juvenile Arthritis

When a child or teen is diagnosed with juvenile arthritis (JA), they might feel alone or not able to do activities they’ve done easily in the past. Art for Arthritis, an Arthritis Foundation fundraising event being held in three cities in September, gives children and teens diagnosed with JA or a rheumatic disease a feeling of togetherness and creative expression. Through these life-changing events, kids are paired with a professional artist and together, they turn a potentially challenging and painful situation into beautiful and inspiring pieces of art.
Continue reading Art for Arthritis: Getting Creative in the Fight Against Juvenile Arthritis