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 diaryofageneticdefect.blogspot.com Joined June 2019

Tweets

705
Followers

152
Following

747
Likes

3K

Diary Of A Genetic Defect @OfDefect

2 years ago

Kidney surgery today

0 0 3 9 0

Diary Of A Genetic Defect @OfDefect

2 years ago

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

0 0 0 16 0

Diary Of A Genetic Defect @OfDefect

2 years ago

"it's time to take it out" A robot will do it...

0 0 1 10 0

Diary Of A Genetic Defect @OfDefect

2 years ago

Keeping hope alive too

Great Ormond Street Hospital for Children @GreatOrmondSt

2 years ago

Keeping hope alive too

1 17 103 48K 3

Download Video

0 0 0 22 0

NHS England @NHSEngland

2 years ago

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. 🩸

3 57 44 23K 0

Download Image

Diary Of A Genetic Defect @OfDefect

2 years ago

Who can tell what I get when I have an MRI...

0 0 0 19 0

Download Image

NHS Million @NHSMillion

2 years ago

We agree with every word of this. Please RT if you do too.

902 9K 16K 778K 19

Download Image

Diary Of A Genetic Defect @OfDefect

2 years ago

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

0 0 0 9 0

Angela @AngelaEuropean

2 years ago

@HackedOffHugh 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…

6 116 110 18K 2

Diary Of A Genetic Defect @OfDefect

2 years ago

For those of us who find today bitter sweet I see you

0 0 0 20 0

Diary Of A Genetic Defect @OfDefect

2 years ago

When you live in Africa and your child is ill... The 2 tests Positive for Malaria And she has exams 😬

0 0 0 19 0

Download Image

Diary Of A Genetic Defect @OfDefect

2 years ago

Umm. Not COVID. Different thing.

0 0 0 12 0

Download Image

NHS Organ Donation💗🫀🫁 @NHSOrganDonor

2 years ago

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

0 28 41 6K 0

Download Image

Diary Of A Genetic Defect @OfDefect

3 years ago

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

0 0 0 48 0

Chelsey Gomez | Artist & Cancer Community Advocate @ohyouresotough

3 years ago

We need authentic voices in the cancer space now more than ever. Speak your truth and don’t apologize for it.

7 29 150 6K 0

Download Image

Diary Of A Genetic Defect @OfDefect

3 years ago

Sometimes the fact I need hydrocortisone is annoying, the fact I don't have enough with me is defo really annoying right now

0 0 0 25 0

Diary Of A Genetic Defect @OfDefect

3 years ago

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