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.
By the time Britney was 10, she frequently told her parents about consistent pain in her ankles, knees and wrists. Again, they just believed she was growing and would give her ibuprofen. At 13, after dealing with frequent numbness in her pinky and an inability to hold things in her affected hand, Britney and her parents were desperate to know what was going on. Bloodwork and X-rays were done to rule out cancer or other common causes. After seeing an orthopedist specializing in hands and wrists, she was correctly diagnosed with neurogenic thoracic outlet syndrome (NTOS).
However, that diagnosis was just the beginning. When her bloodwork came back, all of her levels were high in inflammation. Her primary care physician sent her to a pediatric rheumatologist, who diagnosed Britney with juvenile idiopathic arthritis (JIA).
Knowing What Was Going On Was a Big Relief
A correct diagnosis felt amazing to Britney, especially since her chronic pain had long been blamed on growing pains — or she was accused of making up her symptoms for attention. “After you’ve been told for so long, ‘Are you sure you’re not faking it?’, you sometimes start to doubt yourself because everyone says you’re just fine, so it was definitely a relief,” Britney says.
据她的风湿病医生说，她小时候经历的单核细胞增多症和人类细小病毒的短暂发作可能是引发JIA的原因。这对于患有JA的孩子来说是一种相对常见的现象;除非他们生来就有，否则通常是由疾病或感染引发的。
Britney feels lucky that her pediatric rheumatologist is so close to where she lives. Especially since she has friends who must drive five or more hours to see a doctor who might not even specifically be a pediatric rheumatologist. She also appreciates having a doctor who listens to her about her condition and encourages her to be an Advocate.
According to Angela, her mother, Britney is the type of kid who believes knowledge is power. “She wants to be in the know and learn as much as possible about a subject,” her mother says. “After her diagnosis, she went to sites recommended by her doctor and began researching everything she could find to learn more about JIA.” This led Britney to the Arthritis Foundation and Kids Get Arthritis Too resources.
Britney also became active on social media, posting on Instagram and making friends on an app called Musica.ly. One young lady she became friends with also had juvenile arthritis and introduced her to Camp M.A.S.H. (Make Arthritis Stop Hurting) in Mobile, Alabama. Camp M.A.S.H. is a JA camp that partners with the Arthritis Foundation and features a weeklong recreational program for kids ages 7-17 who have a form of JA or related autoimmune disease.
In most cases, Camp M.A.S.H. is only open to kids who live in Alabama and surrounding states. Since the Gifford family lives in Missouri, Britney didn’t technically qualify. But she applied anyway and soon heard back from the camp director. He wanted to make sure they realized the camp was in Alabama.
Once that was clarified, he told them she was more than welcome to attend the upcoming program. Attending Camp M.A.S.H. was a life-changing experience for Britney. For the first time, she was spending time with kids like her who understood what she was going through and were supportive of her limitations.
Britney also learned about the Arthritis Foundation’s National Juvenile Arthritis Conference. Her parents urged her to apply for a conference travel award and agreed to cover the rest of the costs if they got it. When they received the fantastic news they’d been approved, they began planning their trip to Washington, DC, for their first JA Conference. There, Britney was able to make lasting connections, meeting friends she still speaks with regularly; she served as the head teen for her age group.
Getting Involved in the JA Fight Is Key
吉福德一家继续参与其中，参加了在休斯顿举行的下一届JA大会，并获得了2019年在圣路易斯举行的Jingle Bell Run的荣誉;布兰妮是青年获奖者，她和她的母亲是母女获奖者。通过这样的方式，整个家庭增加了他们的宣传力度，展现了宣传JA的积极影响。“我的荣誉角色给了我一个更大的平台，”她说。“与更多人分享我的故事让我更有力量。”他们已经在计划去奥兰多参加今年的JA大会“家庭团聚”，布兰妮将在那里领导青少年小组委员会。
Another way Britney has worked to spread information about JA was putting together a Juvenile Arthritis Cookbook, containing recipes from her and 25 other kids living with JA. She asked them to share their story and favorite recipe. In the next couple of years, they hope to release an updated cookbook including recipes from Britney’s friends outside the U.S.
The Giffords also run multiple fundraising and awareness events of their own, including bingo nights, chili cook-offs and a fundraiser they dubbed Flock & Flush Out Juvenile Arthritis. They received donations to either “flock” someone’s yard (cover their lawn with pink flamingos) or “flush” it (placing a bright blue toilet in their front yard). Donors could get the flamingos or toilet removed — or donate to prevent getting “flocked” or “flushed” in the first place!
The ultimate goal for Britney and her family is to get the word out about juvenile arthritis, letting people know kids get arthritis, too, and how serious the disease is. “We’ve experienced firsthand the misinformed ideas people have about arthritis,” Angela says. “Britney has even been told that if she’d eat healthier and exercise, she wouldn’t have arthritis.”
最重要的是，吉福德一家专注于提高人们的意识，让人们知道他们可以用不同的方式来帮助传播JA。在寻找治疗关节炎的战斗中，他们是非常坚定的战士。
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March 18, 2020, is World Juvenile Arthritis Day. On this date, we shine a light on JA — raising awareness of a complex group of childhood rheumatic diseases most people don’t know about. Besides affecting joints,juvenile arthritiscan also affect the heart, lungs, eyes, skin and muscles. And it often leads toemotional, school and social issues.
The Arthritis Foundation makes JA one of our top priorities, supporting life-changing research and resources — and bringing the JA community together. In many places, there arelocal support groups to meet other JA families in person. Or you can connect with other parents and caregivers in theLive Yes! Online Community. You can also reach out to a licensed social worker at the Foundation’s Helpline bysubmitting a questionor calling 844-571-HELP (4357).
Be part of the solution by giving a generous gift today.