There aren't enough Rheumatologists to treat the 300,000 children in the U.S. There are only about 220, according to the Arthritis Foundation. Emily's case is pretty sever so we didn't experience the normal 6 month wait to confirm a diagnosis and we've always had priority at the office, but most of these children wait 6 months or more. I couldn't imagine. We first heard Still's Disease two weeks into her first hospitalization. I believe that doctor saved Emily's life because by the time we got her into the children's hospital she was in heart failure and taking a turn for the worse quickly.
Whenever Emily goes to the Rheumatologist it is not a quick, easy visit. The time with the doctor is quick and usually only takes about 20 minutes, but we wait and wait and wait. This last time we waited 1.5 hours in the exam room (which is torture for small children) because her normal doctor is on maternity leave. By the time we saw the doctor for our 10:30 a.m. appointment it was noon, we were all hungry and Emily had drawn all over the entire exam table paper twice. Our two year old had finally slid his way over the entire room floor (picking up who knows what type of germs) and was considering drawing on the actual exam table with a pen (ok, I may have allow him to draw a line or two, but hey don't shut us in a 10x10 room for that long with a two year old).
We are lucky, some children have to drive hours to see a doctor and some have no choice but to see an adult Rheumatologist and that's difficult because the adult diseases are different from the children's.
We need more pediatric Rheumatologists.
Amen to that! Our rheumy is 2.5 hours away but luckily he is always very prompt and will spend as much time with us as he needs to. So we drive 2.5 hours there, spend 30 minutes at the appointment, and drive 2.5 hours back! It makes for a long boring day.
ReplyDeleteHi AJ,
ReplyDeleteI apologize for posting this on your blog, I jsut didn't know how else to reach you.
I'm Natalia, the Community Coordinator at WEGO Health, a small online community of Health Activists that work to create resources and spread education to empower online health leaders. I am currently working on a project with JA and in my research I came across this blog. You have really created a great resource for the online JA community and as such I thought you might be interested in participating in our upcoming arthritis related Health Activist Insight Group. Our Insight Group will focus on JA, specifically SJIA and I would love to include your perspective!
We have set a date for the panel, it will take place next Thursday, November 15th. We will be holding four, one hour long sessions to accommodate everyone's schedules. They will take place at Noon ET, 4PM ET, 6PM ET and 9PM ET.
Just to give you a little more background about the panel, the way the panel will work is each participant will call into a conference call and will also login to an online meeting where they will be able to see a moderator from WEGO Health go through a power point presentation. We will just be asking questions about the online SJIA and JA communities, gaps in education that may exist and what kinds of resources could be created to empower the community. In this particular insight group we will be discussing some topics around biologic treatments as we have heard from some community members that there seems to be a gap in knowledge about some of them so it would be helpful if participants had some knowledge level around them. We are really just looking for candid feedback and thoughts from everyone on the call so there's no need to prepare anything. We keep these very casual. Each participant will receive a $35 Amazon.com gift card as a thank you for giving up your time. This particular panel is being sponsored by a pharmaceutical company, the company wants to understand more about the online community and run some ideas by you guys to see what kinds of resources they could build to help the community. I wanted to make sure you knew that up front in case you had any questions or were uncomfortable with that.
Also, if you know any other SIJA or JA Health Activists who might be interested in this opportunity please feel free to forward along this email or send me their contact and I will reach out to them directly.
I hope all is well and I really look forward to hearing back from you!
All my Best,
Natalia
Natalia Forsyth
Community Coordinator
WEGO Health
nataliaf@wegohealth.com