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Family support was also perceived as important, particularly for younger patients: ‘Mum is the reason I'm probably still here, because mum keeps track of everything… On a practical level, screening was often a family affair: ‘We book [appointments] all on the same day, so it is like a family trip in, so it just makes it a lot easier' … Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel–Lindau disease. European Journal of Human Genetics. 2015 Jan. (full article): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266731/
Having VHL in common with other family members strengthened relationships for some: ‘Obviously my mum goes through the same thing that I do so we talk quite often about it and from that point-of-view, I guess it's brought us a lot closer together and we share experiences, you know, every time we have our tests' … https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266731/
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United in disease: mother and son fight recurrent tumours
For Linda Rousselle and her son Loïc Rousselle-Charbonneau … operations and hospital visits are part of everyday life. Both suffering from Von Hippel-Lindau syndrome, a rare and orphan hereditary disease…
Originally in French: “Unis dans la maladie: une mère et son fils combattent des tumeurs à repetition”, Le Journal de Montréal, February 2, 2020. https://www.journaldemontreal.com/2020/02/02/une-mere-et-son-fils-unis-dans-la-maladie
Power to all the mamas out there… As someone who has endured 2 abdominal surgeries & a brain surgery, I truly thought a c section would be simple (wrong wrong wrong)… Blog, April 2019
This is wonderful time have a group in Canada. My son and step daughter, 25, both have VHL. My son is 10 so I've joined on his behalf ... VHL Canada, Alberta, 2018
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