Diary Of A Genetic Defect
@OfDefect
A warrior of VHL. Each year I wait to find out if the year ahead will be a good one or another year of treatment. Posting old blog posts & new thoughts. She/her
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I am sharing what my life is like with #VHL. I hope it will help others See diaryofageneticdefect.blogspot.com for my full thoughts #Cancer #braintumours
Maybe when it's too repetitive Maybe when it's not a simple cure Maybe when you can't feel too much pain Maybe when your body says "no more" Maybe when you hear real understanding Maybe when you don't survive Maybe when you're at you're lowest Maybe then your fight is live
Keeping hope alive too
“Aditi's always dancing and singing. We’re so happy that she can be the amazing version of herself that she is, thanks to her dual transplant.” Uday, Aditi’s dad. ✨ 8-year-old Aditi is the first child in the UK to receive an improved kidney transplant. gosh.nhs.uk/news/gosh-pati…
Every day, thousands of people’s lives are saved or improved thanks to the generosity of blood donors. You can support the NHS in its 75th year by giving blood. It’s quick and easy and in one hour up to three lives can be saved. Book now at blood.co.uk. 🩸
We agree with every word of this. Please RT if you do too.
Prescription exemption Does anyone know where the link is to renew the card? And - as I'm never going to grow back my adrenal glands - why do I need to renew. Must save #nhs if we can avoid the unnecessary bureaucracy
Apparently there's somewhere the public can have their say. We need to do this VERY loudly. Please share widely. transportfocus.org.uk/news/rail-stat…
For those of us who find today bitter sweet I see you
When you live in Africa and your child is ill... The 2 tests Positive for Malaria And she has exams 😬
Right now, about 650 people are waiting for a liver transplant. That’s why it’s so important to register your decision to become an organ donor, so more lives can be saved and improved. Learn more about liver donation this #WorldLiverDay ➡️ bit.ly/3MMRkMq
Feeling odd about my not having a scan. Wise husband says not to worry, it can wait a bit, I wish my brain was so wise in the middle of the night #VHL #kidneycancer
We need authentic voices in the cancer space now more than ever. Speak your truth and don’t apologize for it.
Sometimes the fact I need hydrocortisone is annoying, the fact I don't have enough with me is defo really annoying right now
I talked to a A-level biology class about my life with VHL. The starter for this lesson is essentially a similar genetic profile to me and the students are looking at the ethics of genetics. I've talked about it before, the teacher and I have this routine down now. #VHL
Dear Sajid, We already pay for GP and A&E visits through tax and national insurance. Hope that helps. independent.co.uk/news/uk/sajid-…
Need medical help? Use 111 online to get assessed and directed to the right place for you, like an urgent treatment centre. More info ➡️ nhs.uk/111
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