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).
在我11岁的时候，我被诊断为慢性复发性多灶性骨髓炎(CRMO)，这是一种罕见的骨病，是包括在关节炎伞定义中的许多疾病之一。我的诊断是在被告知我的骨头疼痛只是“生长的疼痛”一年多之后做出的。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.
在美国有30万儿童患有幼年关节炎，但只有不到350名经过委员会认证的、执业的儿科风湿病医生。也就是说每900个孩子才有一个医生。Due to this shortage, there are 8 states with no practicing board certified pediatric rheumatologists, and 5 states with only one. Only 25% of children with arthritis can access the care and treatment that they need. A lack of treatment can lead to worsened symptoms, which is very painful and heartbreaking for patients and their families. Many children must travel hundreds of miles, simply to see a specialist for their disease. Even those who are fortunate enough to have doctors close by often have to wait months to be seen.
Luckily, there is a bill being considered in Congress that is pushing to address this shortage. The Ensuring Children’s Access to Specialty Care Act (S. 989/H.R. 3767), would make pediatric subspecialists eligible for the National Health Service Corps loan repayment program. Currently, pediatric subspecialties, such as pediatric rheumatologists, are not eligible to receive loan repayment from this program, which contributes to the severe shortage of doctors that can treat rare diseases, such as juvenile arthritis.
The Junior Ambassador Program is made up of passionate individuals, between the ages of 13-17, that participate in several activities to advocate for people with JA. As a part of the Junior Ambassador program, we receive bimonthly trainings and assignments that we can accomplish to raise awareness for JA. In May, our assignment was to petition signatures to our senators, asking them to support the Ensuring Children’s Access to Care Act. The Junior Ambassadors competed to see who could gather the most signatures during the petition activity. At the end of the challenge I collected nearly 600 signatures and won the competition! I sent them onto my senators, with the hope that the outpouring of support would encourage them to sign onto the bill.
Collecting signatures for this important legislation was an amazing experience! I felt very empowered to be able to spread awareness about this problem, while gaining support for the bill. Each time I requested a signature, I spoke about what the bill does, why it is important, and shared statistics about the issue, and helped teach people that kids get arthritis too.
关节炎基金会已经准备好了一封带有重要统计数据的预格式信件，并向你的特定国会议员发出请求——如果他们已经支持该法案，你就可以向他们发送一封感谢信，而不是请求赞助。你可以用你的个人故事来修改这封信，帮助你的国会议员了解孩子也会得关节炎!It’s easy and takes five minutes or less to send your story to your elected officials,take action today!
Related Resources:
- Become a Junior Ambassador
- Learn More About the Pediatric Rheumatology Shortage
- 七月是JA意识月-分享你的故事，传播意识和捐赠!