132: When Children Have Arthritis

Airing Pain

How do you identify illness in young children and coping as a family.

This Airing Pain was recorded at the Scottish Network for Arthritis in Children SNAC’s 2022 Family Weekend at Crieff Hydro, which brings together families recently affected by juvenile idiopathic arthritis and some of the country’s leading paediatric rheumatology experts.

Issues covered in this programme include:

juvenile idiopathic arthritis, autoimmune disease, coping as a family, rheumatology, paediatrics, support networks, identifying illness in young children, movement and exercise

Time Stamps:

minutes: seconds

00:00 - introduction to SNAC's family weekend by Sharon Douglas
04:03 - introduction to juvenile idiopathic arthritis by Julie Duncan
07:13 - how does juvenile idiopathic arthritis present?
09:00 - what is SNAC and personal stories from a parent.
12:56 - parent of a child with juvenile idiopathic arthritis shares how they first spotted it.
14:42 - Vanessa Raimondo discusses medication options for juvenile idiopathic arthritis.
18:44 - parents & children share their stories.
21:33 - Vanessa Raimondo discusses medication side effects.
23:57 - Alison Ross discusses coping mechanisms for juvenile idiopathic arthritis & more on medications and treatments.
30:23 - parent of a child with juvenile idiopathic arthritis on her daughter's journey with JIA, medications and diagnosis.
31:15 - coping as a parent of a child with juvenile idiopathic arthritis.
31: 54 - coping with juvenile idiopathic arthritis as a family
34: 29 - parents of a child with juvenile idiopathic arthritis share their family's story.
39:10 - how does juvenile idiopathic arthritis make the children who suffer from it feel?
41: 18 - family from Shetland share their story of having a child with JIA in a remote area.
43:27 - Jo Walsh tells us about SPARN (Scottish Paediatric & Adolescent Rheumatology Network) and how they support families with JIA.
47:00 - how to handle the transition from children's health services to young adult services.
48:06 - Vanessa Raimondo tells us about what we can do (aside from medications) to manage JIA.
49:27 - young person shares their experience of juvenile idiopathic arthritis and still enjoying sports, exercise and success growing older with JIA.
54:20 - Sharon Douglas, chairperson and co-founder of SNAC, conclusion and raising awareness about JIA.

Special Thanks:

This programme exists due to funding from Trefoil House Organisational Grants, the New Park Educational Trust and WCH Trust for Children.

Contributors:

• Parents (and their children) of 23 children between the ages of 5 and 14 who have juvenile idiopathic arthritis.
• Sharon Douglas - SNAC (Scottish Network for Arthritis in Children) chairperson & co-founder.
• Julie Duncan – General Paediatrician NHS Lothian District General Rheumatology Clinic.
• Vanessa Raimondo - Rheumatology Nurse based in Edinburgh.
• Alison Ross – Children’s Arthritis Nurse working in Aberdeen.
• Jo Walsh – Paediactric Rheumatologist based in Glasgow, working as part of SPARN (Scottish Paediatric and Adolescent Rheumatology Network).

More Information:

• SNAC - Supporting Children & Families with JIA
• Versus Arthritis
• SPARN - Scottish Paediatric & Adolescent Rheumatology Network
• Airing Pain 106 - Pain Education for Doctors, Patients and Parents
• Airing Pain 99 - Transition Services for Adolescents with Chronic Pain
• Airing Pain 78 - Putting Children's Pain in the Picture
• Airing Pain 59 - Pain in the Family: Young Adults 1 of 2
• Airing Pain 60 - Pain in the Family: Young Adults 2 of 2