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 as juvenile 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 reading Ambassador 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 with juvenile 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’. CRMO affects 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. I advocate for arthritis as a Junior Ambassador for 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 reading Junior Ambassador Spotlight – Maya Miserlian
From Ethan Berkovitz
My name is Ethan Berkovitz, I am a 16-year-old high school sophomore and my favorite sports are soccer and futsal, a type of indoor soccer with five players per team. I play on the U.S. Youth Futsal 16-and-under National Team, and this summer I got to compete and represent our country in Costa Rica. I have been playing soccer since I was 3 years old – and I have juvenile 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 reading Junior Ambassador Spotlight – Ethan Berkovitz, Ohio
School is out, so now what do you do to engage your kids? On June 29, a number of parents took their families to Harrisburg, PA, to participate in the 2016 Pennsylvania Advocacy and Access Day. Some of the youth were already pros having attended previous advocacy days and our Advocacy Summit in Washington, DC. For others it was a first time experience.
Continue reading Young Advocates in Pennsylvania Speak Out