Roadmap Rare diagnosis Communication
Back to roadmapPassing on information regarding health, educational and psychosocial needs to individuals and groups involved in daily family life is vitally important in creating and maintaining connections as well as ensuring that your/your child’s needs are met in the best ways possible. Talking with people who are a close part of daily life builds their knowledge and understanding, which can help on many levels including emotional and practical support.
School
Local and national legislation exists in many areas to ensure students with disabilities can access and participate in education on the same basis as other students. Accessible and inclusive learning spaces, adequate teacher staffing and training, consideration of physical and social factors impacting education access and active working relationships between carers/families and education professionals all contribute significantly to the experience of attending school. With a rare diagnosis, it is very important that there is clear documentation from specialists detailing signs/symptoms and the associated impact to maximise access to appropriate school assessments, aids and services.
Resources
- https://www.gemssforschools.org/default
- https://resource-hub.globalgenes.org/kb/article/32-advocating-for-your-child-with-a-rare-disease-at-their-school/
- https://geneticalliance.org/resources-and-information/advocacy-atlas/education-services
- https://cerebra.org.uk/download/education-health-and-care-ehc-plans-education-in-england-a-guide-for-parents/
Talking with family, friends, affected child and/or siblings
The questions of when, who and what to tell depend on individual circumstances such as adjustment and coping, types of relationships and impact of the condition for you and your family. Many families wonder how and when to talk to their child/young adult about a genetic condition in an age and developmentally appropriate manner while promoting psychological well-being.
Openness about a genetic condition in a family can increase your child’s coping, improve their attitude towards the condition, reduce stress and result in fewer psychological issues long-term. Unaffected children can have many different feelings about siblings with a genetic condition depending on individual factors such as age, temperament and particular aspects of their sibling’s diagnosis (e.g. challenging behaviour, communication difficulties, level of care required).
Pregnancy planning when a family member has a rare condition can raise many concerns about the possibility of recurrence- seeking specific information from a genetic professional can help with clarifying risks and options as well as decision-making.
Resources
- https://globalgenes.org/wp-content/uploads/2019/01/GG_toolkit_discussing_genetic_disease_web-hyperlinked.pdf
- https://raisingchildren.net.au/disability/family-life/siblings/siblings-of-children-with-disability
- https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/Siblings-of-Children-with-Chronic-Ilnesses.aspx
- https://raisingchildren.net.au/disability/family-life/communicating-relationships/parent-feelings-additional-needs
- Your child’s disability: talking about it | Raising Children Network
- https://www.genetics.edu.au/SitePages/Genomic-Testing-Family-Considerations.aspx
- https://www.genetics.edu.au/SitePages/Genetic-Services.aspx
Suggest a resource: send email to gcwg@udninternational.org