Arthritis Blog Home»Advocacy Blog Home» Tag Archives: juvenile arthritis advocacy
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.
我并非一直患有幼年关节炎。这一切都始于我8岁那年，那时我的腿、手和手腕开始疼痛。我以为我有生长疼痛，但在短短的几个月里，它变得越来越严重。我甚至不能走下楼梯，也不能去车站，所以我爸爸不得不抱着我。有时，我没有去学校，因为我感觉不太好，我会发烧，所以我感觉很不舒服。我喜欢和我的朋友们一起做各种运动，我参加了很多不同的球队。我还会骑自行车、玩滑板、滑旱冰等等。
Continue readingJunior Ambassador Spotlight – Ethan Berkovitz, Ohio→
Arthritis is not just your grandparent’s disease, and at this year’s Advocacy Summit, our young participants will tell Members of Congress that kids get arthritis, too!
On March 6 and 7, more than 400 people affected by arthritis from all across the country will convene in Washington, DC, as part of the Arthritis Foundation’s2017 Advocacy Summit.
Attendees will include an estimated 100 kids and teens who will participate in a specialKidsandHigh SchoolSummit track. Uniquely designed for kids/teens who are affected byjuvenile arthritisand childhood rheumatic diseases, this track includes interactive activities that will empower them with the skills and confidence they need to raise awareness for the arthritis community, young and old, and help change perceptions of this disease. Then they will meet with Members of Congress, educating them aboutbarriers to health careand motivating them to consider all people who live with arthritis when they design health care legislation.
Continue readingMore than 100 Kids and Teens to Meet with Members of Congress at Advocacy Summit→
