#CJDAwareness
LightNews LightNews
chronoculture.bsky.social
Everyone could be affected by CJD. Here are some stories from people involved with the U.K. CJD Support Network.

#CJDAwareness
A group of people wearing yellow U.K. CJD support network t shirts stand arm in arm together. They look happy to be together. The image has a quote. Ian lives in South Wales. He lost his wife Darlene to sporadic CHD in 2024, he says: Being in touch with the CJD Support Network has supported me through the most traumatic period of my life. Now involved in fundraising and promoting understanding of prion disease. This has helped me through my own, and my family’s continuing journey. A woman with shoulder length curly hair smiles to the camera. In 2023 Libby lost her Mum Jane to sporadic CJD. Me and my family will be forever grateful to the CJD Network for aiding in our journey, which continues today. We continue to gain emotional support, friendship, information and a close sense of community. A man and woman lean close together and smile out. They have two floppy eared spaniel dogs with them. Dave lives in Yorkshire. He is at increased risk of iatrogenic CJD. I’ve contacted the CJD support network helpline when feeling really low. They are always there for you with support, they have been so good for me. I’ve also attended online events and had contact with people on the Facebook group. They know what you’re feeling and understand what you’ve been through. Over recent years I’ve been working hard to raise money and awareness. A young woman and man look out at the camera with massive grins on their faces. Another photo shows the same young woman running in a road race. Alice lives in London and her family are affected by inherited prion disease. I volunteered with the CJD Support Network. I also raised £5,400 for the Cure CJD Campaign by running a half marathon this summer. It felt so good to actually do SOMETHING to help make a treatment available. My brother Gabriel got CJD when he was only 19 years old and every minute counts for him.
November 12, 2024 at 9:11 AM
chronoculture.bsky.social
Today is International CJD Awareness Day (12th November). I am raising awareness because I lost a close family member to sporadic CJD, and because families continue to be caught up in this rare diagnosis.

#cjdAwareness
#PrionDiseaseAwareness
Normal prion proteins are found on the surface of everyone’s brain cells. Prion disease starts when these normal proteins misfold and build up in the brain, causing damage. CJD and prion diseases are rare, progressive and currently always fatal, with no existing treatments. The initial symptoms vary depending on the area of the brain affected first, but can include mood changes, sleep disturbance, dizziness, unsteadiness, and forgetfulness. Prion diseases can be sporadic, inherited, and in specific circumstances have been acquired. Sporadic CJD is the most common prion disease, it progresses rapidly and seems to happen at random, usually between ages 45-75. Visit www.cjdsupport.co.uk/fact-sheets for more info on different forms of prion disease. The CJD Support Network is the only UK charity dedicated to supporting the prion disease community. They understand and are there to listen. They will do their best to answer any question. Contact via email on support@cjdsupport.co.uk or call our helpline on 0800 774 7317 (8am-6pm Tue & Fri).
November 12, 2024 at 8:58 AM
chronoculture.bsky.social
12th November is CJD Awareness Day.

Creutzfeld Jacob Disease is a prion disease. A protein misfolds in the brain which causes ongoing damage. It is 100% fatal and most people die within six months of onset of symptoms.

#cjdAwareness
#PrionDiseaseAwareness
#GloballyUnitedForPrionDiseaseAwareness
Image reads ‘Globally United for Prion Disease Awareness. 12th November 2024 International CJD Awareness Day. #cjdAwareness #PrionDiseaseAwareness” It was created by the CJD International Support Alliance. A graphic of an umbrella with the three main types of prion disease underneath. Prion Disease A rare, rapidly progressive and always fatal neurological disease. Sporadic CJD (sCJD) has no known cause and occurs randomly with a lifetime risk of 1:6,000. sCJD accounts for approximately 85%-90% of all cases of prion disease. Atypical forms of sCJD account for less than 1% of all sporadic cases. These include Variably Protease Sensitive Prionopathy (VPSPr) and Sporadic Fatal Insomnia (sFI). Acquired prion disease is the rarest cause representing less than 1% of all prion diseases. Iatrogenic or medically acquired CJD from contaminated surgical instruments, corneal transplant, dura mater graft, and human pituitary hormone treatment for infertility and short statue. Variant CJD (vCJD) acquired from exposure to BSE through consumption of contaminated beef or blood plasma transfusion. Genetic Genetic prion disease accounts for approximately 10-15% of all prion disease cases. Genetic prion disease includes Genetic CJD (gCJD), Gerstmann- Sträussler-Scheinker disease (GSS) and Fatal Familial Insomnia (FFI). DNA can be tested to identify if an individual carries a mutation for prion disease. The vast majority have an autosomal dominant pattern - if one parent carries a mutation for prion disease there is a 50-50 chance for each child to inherit the gene. www.cjdisa.com
November 12, 2024 at 8:53 AM
lhlew.bsky.social
I watched my grandmother completely transform due to CJD. It's brutal. And at present there are no approved prion disease treatments. The CJD Support Network is here for those who are currently being affected. #CJDAwareness www.facebook.com/CJDSupport
November 12, 2025 at 5:16 PM
I’m raising awareness for Creutzfeldt-Jakob Disease (CJD), a rare, fatal neurodegenerative disorder that has no treatment or cure. #CJDawareness #IntlCJDAwarenessDay #cureCJD #CJDday
November 13, 2025 at 4:46 AM
#cureCJD #CJDawareness #missingmom
November 12, 2024 at 5:14 PM
agpat.bsky.social
CJD is a prion disease. A protein misfolds in the brain which causes ongoing damage. It is 100% fatal & most people die within 6 mths of onset of symptoms.
My sister thought she was going mad & so did her Doctor.

#cjdAwareness
#PrionDiseaseAwareness
#GloballyUnitedForPrionDiseaseAwareness
December 1, 2024 at 10:55 PM