Show Notes: Episode 18 - "Living with Multiple Conditions"

00:52 - Tiffany welcomes listeners and co-host, Simon Stones

01:58 - Today’s topic is living with multiple conditions

02:20 – Tiffany’s primary diagnosis is Non-Radiographic Axial Spondyloarthritis, but she also has comorbidities such as Bechet’s Disease and possibly Sjogren’s Syndrome 

03:25 - If you have been sick for a while without an explanation, a diagnosis can be a relief 

04:27 - Simon was diagnosed with Juvenile Idiopathic Arthritis at age 3 and has no memory of his life before Arthritis

07:06 - At 10, Simon was diagnosed with Slipped Capital Femoral Epiphyses 

08:30 - Sometimes secondary conditions can be masked by the symptoms of the primary diagnosis, even when under the care of specialists

09:23 - Patients assume that their specialists will catch new problems, but there is a high risk of new symptoms being dismissed as part of the existing diagnosis

09:45 - Every patient is an expert in their own body and must advocate if they know their symptoms are something to be explored

13:20 - In his teenage years, Simon’s diagnosis was modified to include Psoriatic Arthritis or Undifferentiated Axial Spondyloarthritis 

14:50 - In the UK, no biologic therapies are approved for adults with JIA, so patients must have a new diagnosis so they can have access to medication

15:32 - Managing multiple complex diagnoses in a complex medical system can be very complicated

16:51 - Around 12 years old, Simon developed symptoms of Crohn’s Disease, but the symptoms and markers were attributed to his JlA diagnosis

19:03 - Doctors may be reluctant to order tests that are unpleasant for pediatric patients. Parents may need to advocate strongly for their children if they believe something is wrong.

26:02 - Medicine should be evidence-based and not vary wildly from one doctor to the next

27:10 - A comorbidity is the presence of two related diseases (like Rheumatoid Arthritis and Cardiovascular Disease or Psoriatic Arthritis and Psoriasis) where one is the index disease*

27:33 - Multimorbidity is the presence of multiple diseases without the presence of a specific index disease and requires more holistic treatment

29:23: Some people will combine terminology of related diseases (ex: Lupus and Rheumatoid Arthritis = Rupus)

29:40 - Multiple Autoimmune Syndrome (MAS) is a term many doctors and patients use to refer to the presence of 3 or more autoimmune diseases 

30:56 - Simon read a study that asserted that 25% of the general population of rheumatology patients has 2 or more diseases, but Simon’s experience would suggest it may be much higher than that 

33:13 - Gathering more data would be helpful

34:52 - The actual rarity of having only one autoimmune disease impacts clinical trials because patients with comorbidities and multimorbidities are all excluded from clinical trials

38:17 - When you have multiple diagnoses and multiple specialists, you may need to become your own coordinator of care

39:04 - Pediatric specialists seem to be better about coordinating with each other, but adult specialists often rely on the patient to report what they have been told by their other specialists

41:10 - If you are not advocating for yourself and managing your own care, you run the risk of important warning signs being missed

41:55 - General practitioners used to be very involved in managing patient care across multiple specialities, but that is no longer happening

42:43 - Healthcare systems now really could benefit from moving to a coordinated care model

46:02 - Obtaining health records can be very difficult because patient data is the property of the hospital or doctor’s office instead of the patient

49:40 - Patient advocates should unite to tackle the problem of inconsistent patient data and data ownership

54:27 - The system needs to change, and it can result from grassroots efforts 

55:00 - Decision-making processes about reforming the healthcare systems must include patient voices

55:17 - Patients often have the best solutions to healthcare systemic problems because we know exactly what we need to make things work better and reduce waste

56:13 - Tiffany thanks Simon for co-hosting today’s episode

56:52 - If you have an opinion on this topic, we want to hear from you! 

57:08 - If you would like to take a seat at the table, visit us on social medias @IfAiArthritis on all platforms or email us @ podcast@aiarthritis.org

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