Roadmap Rare diagnosis Everyday Life
Back to roadmapLiving with or caring for a family member with chronic illness and/or disability regardless of underlying cause is a shared experience which impacts all aspects of family life.
Following the diagnosis of a rare condition, there can be ongoing experiences of frustration, isolation and restricted access to services due to low numbers of individuals with the same diagnosis as well as limited knowledge within medical, psychological and social settings.
Living with a rare condition may involve shifting expectations from a cure or definitive treatment to quality care focused on the needs of you/your child and the rest of the family.
It is very common to experience fluctuating thoughts and feelings regarding the impact of the condition. Increased stress over a prolonged period of time can have significant implications for the physical and mental health of all family members so connections with others experiencing similar practical and emotional challenges can be a very helpful source of support.
Resources
Living with a rare condition
- https://raisingchildren.net.au/disability/services-support/support/raising-children-with-rare-diseases
- https://raisingchildren.net.au/disability/family-life/family-management/routines-disability
- https://cerebra.org.uk/get-advice-support/parent-guides/
- http://www.sourcekidsdirectory.com.au/
- https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/How%20Chronic-Illness-Affects-the-Family.aspx
- https://www.navigatelifetexas.org/en/family-support/helping-your-child-live-with-chronic-illness
- https://www.navigatelifetexas.org/en/diagnosis-healthcare/children-with-multiple-disabilities-rare-conditions-undiagnosed
- https://www.healthychildren.org/English/family-life/health-management/Pages/For-Children-and-Youth-with-Special-Health-Needs-Non-Medical-Needs-Matter-Too.aspx
- https://raisingchildren.net.au/disability/family-life/communicating-relationships/disability-handling-reactions
- https://globalgenes.happyfox.com/kb/article/34-taking-control-optimizing-your-potential-as-a-young-adult-with-a-rare-disease/
Mental health & wellbeing
- https://raisingchildren.net.au/disability/family-life/communicating-relationships/parent-feelings-additional-needs
- https://www.navigatelifetexas.org/en/family-support/the-power-of-counseling-for-parents
- https://www.mytime.net.au/
- Rareminds | Mental Health Services for the Rare Disease Community
- Resources & support for your mental health and wellbeing - Source Kids
- Intellectual Disability Mental Health Connect | Intellectual Disability Mental Health Connect (idmhconnect.health)
- https://resource-hub.globalgenes.org/kb/article/276-mental-health-and-self-care-resources-for-rare-patients-and-caregivers/
- https://supportforfathers.com.au/resources/
- Handling Grief: Supporting Fathers of Children with Special Needs | Fatherhood.gov
- Providing Emotional Support and Resources Specific to Fathers | Fatherhood.gov
Financial aspects
Significant financial concerns often arise from multiple factors such as loss or reduction in employment as a result of increased care needs and direct costs associated with multiple specialist appointments, testing and equipment.
Resources are available to help with accessing financial assistance for many aspects of daily life including income support, carer’s allowance, housing benefits, equipment funding, disability living allowances, prescription allowances as well as travel and accommodation costs.
Resources
- https://rarediseases.org/for-patients-and-families/information-resources/patient-and-caregiver-resource-center
- https://globalgenes.happyfox.com/kb/article/1-rare-insight-building-a-stronger-financial-future/
- https://cerebra.org.uk/get-advice-support/parent-guides/
- https://rarediseases.info.nih.gov/contact
- https://www.servicesaustralia.gov.au/living-with-disability
Suggest a resource: send email to gcwg@udninternational.org