Siblings and FOP
Living with FOP as an individual is a challenge, but having a sibling with a rare disease brings its own challenges and emotional journey. Many siblings of someone with FOP take on a caring role too.
Sibs is the UK’s charity, dedicated to supporting indivuals who have a sibling with a disability. Their webiste has a wealth of information, advice and guidance for adults, including where you can connect with other siblings in a similar situation. You can download an eBook with advice for adult siblings here: www.sibs.org.uk/support-for-adult-siblings/ebook-for-adult-siblings/
They also launched at sister charity, Young Sibs, which is focussed on the needs and feelings of young people who have a sibling with a disability.