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.
Sibsis the UK’s charity, dedicated to supporting individuals who have a sibling with a disability. Their website 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.
The charity Contactalso has some resources about supporting the siblings of someone with a disability. There is also a free downloadable guide.
“Coping with an illness in the family can often lead to siblings having to adopt a caregiving role and therefore, many miss out on critical areas of childhood development, such as socialising and developing relationships with other children.
At Over The Wall, we provide free residential camps specifically for the siblings of children with health challenges, allowing them to meet new friends, accomplish new challenges and above all, have fun.” Over The Wall Website
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