Show Notes

00:53 - Katie welcomes listeners.

01:16 - Today’s topic is about being young and diagnosed with an invisible illness, as well as the importance of differentiating between the different types of AiArthritis diseases.

01:31 - Katie is joined by Deb, a recurring co-host who was diagnosed with RA at age 15.

02:05 - Katie was also diagnosed as a juvenile with JIA (juvenile idiopathic arthritis).

02:52 - Both Katie and Deb were treated by an adult rheumatologist because pediatric rheumatologists are very rare if they are available in your community at all.

03:20 - Deb and Katie share their respective diagnosis stories.

09:56 - It can be difficult for juveniles to get peer support because most people assume arthritis only affects elderly people.

11:07 - Friends sometimes stop inviting patients to participate in activities because they don’t understand the physical limitations of people with AiArthritis.

12:25 - Juvenile arthritis patients may find it difficult to continue activities they had previously enjoyed because of pain and fatigue.

14:48 - We want to hear from our listeners: If you were diagnosed as a young person, are you still using the same diagnosis? 

15:12 - Stills Disease Awareness Day is coming soon.

15:24 - Stills Disease is actually an umbrella term that encompasses Systemic Juvenile Idiopathic Arthritis and Adult Stills Disease (the difference being whether you were diagnosed before or after age 16).

17:55 - Katie was diagnosed with JRA, but she generally refers to her disease as simply RA or arthritis since becoming an adult.

19:27 - Getting an accurate diagnosis can take many years because doctors don’t believe the patient or symptoms are not obvious or the symptoms do not match any one specific diagnosis readily.

24:01 - Early intervention is critical if the patient is ever going to achieve remission, so identifying the appropriate screening tools and making sure all AiArthritis patients receive them is very important.

25:56 - Especially in very young children, persistent parents are critical to getting an accurate diagnosis and early intervention.

29:37 - Patients living with AiArthritis diseases sometimes feel like they are just waiting for their condition to deteriorate.

30:06 - New medications for AiArthritis hitting the market provide hope for all patients to improve.

33:16 - With regard to changing medications, having surgeries, or any other therapeutic decisions, it’s important that the patient be emotionally ready to proceed.

35:50 - Shared Decision Making between patients and rheumatologists helps ensure that patients are comfortable with the therapeutic choices being made for their care.

37:22 - To continue this conversation, join us in the Facebook group for the talk show.

37:28 - You can also find us on all social media platforms @IFAiArthritis.

38:43 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform.

39:04 - Or message us via social media or email us at podcast@aiarthritis.org.

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