58 min
Episode 18 The Juggling Act: Living with Multiple Conditions AiArthritis Voices 360 Talk Show
-
- Education
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Simon Stones discuss the prevalence and logistics of living with multiple conditions. Most health systems have moved away from a model where General Practitioners are managing all aspects of patient care to a model that places more emphasis on specialists and a depth of expertise in a specific disease. The downside to this is it has created a system where patients must be their own Care Coordinators, yet most have no experience or understanding of how to do this. What can be done to change the system? What can you do in the meantime to ensure that your health is not slipping through the cracks? Tune in to this week’s episode to find out.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
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
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Simon Stones discuss the prevalence and logistics of living with multiple conditions. Most health systems have moved away from a model where General Practitioners are managing all aspects of patient care to a model that places more emphasis on specialists and a depth of expertise in a specific disease. The downside to this is it has created a system where patients must be their own Care Coordinators, yet most have no experience or understanding of how to do this. What can be done to change the system? What can you do in the meantime to ensure that your health is not slipping through the cracks? Tune in to this week’s episode to find out.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
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
58 min