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Advocating for the arthritis community, says 27-year-old Stephanie Kwiecien, has restored the voice that bullying shut down.
“Advocacy is really important to me because it gave me back the voice I thought I’d lost,” says Kwiecien, who was diagnosed with juvenile rheumatoid arthritis (now known asjuvenile idiopathic arthritis) when she was 18 months old. During her elementary and middle school years, Kwiecien’s peers were unfazed by her condition and her teachers were understanding. But high school was different.
Continue readingAmbassador Spotlight – Stephanie Kwiecien→
By Maya Miserlian
My name is Maya Miserlian, I’m 15 years old, and I am one of 300,000 children in the US withjuvenile arthritis(JA).
At the age of 11 I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare bone disease that is one of the many diseases included in the definition of arthritis umbrella. My diagnosis came after over a year of being told my aching bones were just ‘growing pains’.CRMOaffects one in every million people, which has left me feeling alone in the past, because I did not know anyone else with my diagnosis. In the past year I was introduced to the Arthritis Foundation, which has played a big role in my journey with CRMO. Iadvocate for arthritisas aJunior Ambassadorfor the Foundation, which has allowed me to take control of my disease and advocate for myself and others with JA. I consider myself lucky – because I live near my specialist and was able to get on medication that works, I reached remission only three years after my diagnosis. However, easy access to a specialist is not a reality for most people.
Continue readingJunior Ambassador Spotlight – Maya Miserlian→
From Ethan Berkovitz
我叫Ethan Berkovitz，我是一个16岁的高中二年级学生，我最喜欢的运动是足球和五人制足球，一种每队五人的室内足球。我参加了美国16岁及以下青少年五人制足球国家队，今年夏天我代表我们的国家参加了在哥斯达黎加的比赛。I have been playing soccer since I was 3 years old – and I havejuvenile arthritis.
I didn’t always have juvenile arthritis. It all started when I was 8 years old, when I started having pain in my legs, hands and wrists. I thought I was having growing pains, but it got worse and worse in just a few short months. I couldn’t even walk down the stairs, or to the bus stop, so my dad had to carry me. Sometimes, I didn’t make it to school because I didn’t feel very well and I would get fevers, so I felt really sick. I loved playing all kinds of sports back then with my friends and I was on lots of different teams. I also would ride my bike, skateboard, rollerblade and much more.
Continue readingJunior Ambassador Spotlight – Ethan Berkovitz, Ohio→
学校放假了，那么现在你做什么来吸引你的孩子呢?6月29日，一些家长带着他们的家人来到宾夕法尼亚州的哈里斯堡，参加2016年宾夕法尼亚州宣传和获取日。一些年轻人已经是专业人士了，他们参加了之前的宣传活动和我们的Advocacy Summit in Washington, DC. For others it was a first time experience.
Continue readingYoung Advocates in Pennsylvania Speak Out→
