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Cavernoma Alliance UK
United Kingdom
Registrace 8. 07. 2018
Cavernoma Alliance UK (also known as CAUK) is a charity created for people affected by cavernoma - otherwise known as cerebral cavernous malformation (CCM); cavernous haemangioma; or cavernous angioma.
Our mission is to improve the quality of life for all those affected and create greater awareness of the condition.
We offer:
- up-to-date information about the condition
- free events nationally with talks by leading medical experts
- a supportive community network
- free membership
For more informaiton, please visit our website at cavernoma.org.uk/ or our facebook page at Cavernoma.Alliance.UK
Our mission is to improve the quality of life for all those affected and create greater awareness of the condition.
We offer:
- up-to-date information about the condition
- free events nationally with talks by leading medical experts
- a supportive community network
- free membership
For more informaiton, please visit our website at cavernoma.org.uk/ or our facebook page at Cavernoma.Alliance.UK
Kim Larkin - Personal Independence Payments (PIP) and Cavernoma
Kim Larkin, Managing Director of LA Directories, discusses the process of claiming PIP Benefits in detail based on her knowledge and experience.
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
For more information about Cavernoma Alliance UK, please visit cavernoma.org.uk/
This is a recording of one of our webinars given by our members, guests and medical experts throughout 2024.
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
For more information about Cavernoma Alliance UK, please visit cavernoma.org.uk/
This is a recording of one of our webinars given by our members, guests and medical experts throughout 2024.
zhlédnutí: 119
Video
Predicting Familial Cavernoma Progression using BioMarkers
zhlédnutí 48Před 16 hodinami
Predicting Familial Cavernoma Progression using BioMarkers Presentations by Associate Professor Peetra Magnusson, Professor Roberto Latini, Dr Francesca Lazzaroni and Favour Onyeogaziri. For references and comments, see below, A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cave...
Jade's Story - Familial Cavernoma
zhlédnutí 2,3KPřed měsícem
In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm. Lucy wanted to help amplify the voices of the cavernoma community, by interviewing people with cavernoma and sharing their stories. In this film Jade tells Lucy about her cavernoma journey. For more information about cavernoma please visit www.cavernoma.org.uk and if you would like to connect with Lucy you...
Roxanna's Story - Asymptomatic Cavernoma
zhlédnutí 1,1KPřed měsícem
In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm. Lucy wanted to help amplify the voices of the cavernoma community, by interviewing people with cavernoma and sharing their stories. In this film Roxanna tells Lucy about her cavernoma journey. For more information about cavernoma please visit www.cavernoma.org.uk and if you would like to connect with Lucy ...
The Spinal Cord and Cavernoma with Mr Daniel Walsh
zhlédnutí 376Před 3 měsíci
A discussion around the Spinal Cord and Cavernoma with Mr Daniel Walsh A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cave...
Oral contraception, HRT and cavernoma with Dr Susanna Zuurbier
zhlédnutí 229Před 3 měsíci
Oral contraception, HRT and cavernoma with Dr Susanna Zuurbier For more information on HRT and Oral Contraception, please see cavernoma.org.uk/hrt-oral-contraception-and-cavernoma/ The study mentioned in this webinar is available here; pubmed.ncbi.nlm.nih.gov/36754635/ A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1...
Christmas Message 2023
zhlédnutí 33Před 7 měsíci
A Christmas Message for all our members in 2023, looking forward to 2024
How to successfully manage tinnitus with cavernoma - Dr Edmund Farrar, Co-Founder & CEO of Oto
zhlédnutí 236Před 8 měsíci
How to successfully manage tinnitus with cavernoma - Dr Edmund Farrar, Co-Founder & CEO of Oto A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is...
Through the surgeon's eyes with Mr Dan Brown, Consultant Neurosurgeon
zhlédnutí 187Před 9 měsíci
Through the surgeon's eyes a challenging case of brain stem cavernoma with Mr Dan Brown, Consultant Neurosurgeon A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A s...
What we have learned from the UK's largest clinical trial for cavernoma Prof Rustam Al-Shahi Salman
zhlédnutí 319Před 11 měsíci
What we have learned from the UK's largest clinical trial for people with brain cavernoma with Professor Rustam Al-Shahi Salman A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembl...
How might gene therapy help and what progress is being made towards this? - Dr Dough Marchuk
zhlédnutí 98Před 11 měsíci
How might gene therapy help and what progress is being made towards this? with Dr Dough Marchuk A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma i...
What is the latest research telling us about what medications help? - Connie Lee
zhlédnutí 680Před 11 měsíci
What is the latest research telling us about what medications help? Connie Lee, Founder & CEO of the Alliance to Cure Cavernous Malformations A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough...
Paediatric neurology and what the future looks like - Dr Greg James
zhlédnutí 247Před 11 měsíci
Paediatric neurology and what the future looks like with Dr Greg James A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cave...
Gene therapy - What is it and how might it help people with cavernoma?
zhlédnutí 106Před 11 měsíci
Gene therapy - What is it and how might it help people with #cavernoma? Increasingly clinicians are looking to gene therapies as a #treatment for #rare conditions. For the 20% of people with the familial form of #cavernoma, gene therapy for #cavernoma may offer an important future treatment prospect. Given this, in the coming years CAUK hopes to kick start gene therapy research in the UK buildi...
Sacha's story - brainstem cavernoma
zhlédnutí 1,4KPřed 11 měsíci
In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm. Lucy wanted to help amplify the voices of the cavernoma community, by interviewing people with cavernoma and sharing their stories. In this film Sacha tells Lucy about her cavernoma journey. For more information about cavernoma please visit www.cavernoma.org.uk and if you would like to connect with Lucy yo...
Emily's story - left temporal lobe cavernoma
zhlédnutí 1,7KPřed 11 měsíci
Emily's story - left temporal lobe cavernoma
Steve Cairns - Recovering Movement Following Stroke & Brain Surgery, a New Perspective
zhlédnutí 358Před rokem
Steve Cairns - Recovering Movement Following Stroke & Brain Surgery, a New Perspective
Dr Shelly Stevens - The Gut - Cavernoma Connection Emulsifiers and More
zhlédnutí 806Před rokem
Dr Shelly Stevens - The Gut - Cavernoma Connection Emulsifiers and More
Let's Talk Cavernoma - Bleeding and Stroke Explained
zhlédnutí 4,9KPřed rokem
Let's Talk Cavernoma - Bleeding and Stroke Explained
Forum 2022 - Dr Anita Rose - Cavernoma and Anxiety
zhlédnutí 308Před 2 lety
Forum 2022 - Dr Anita Rose - Cavernoma and Anxiety
Forum 2022 - Dr Helmut Bertalanffy - Brainstem Cavernoma
zhlédnutí 917Před 2 lety
Forum 2022 - Dr Helmut Bertalanffy - Brainstem Cavernoma
Forum 2022 - Dr Grace Vassallo - The future of paediatric neurology
zhlédnutí 163Před 2 lety
Forum 2022 - Dr Grace Vassallo - The future of paediatric neurology
Moving Forward with Cavernoma Treatments Webinar with Connie Lee
zhlédnutí 703Před 2 lety
Moving Forward with Cavernoma Treatments Webinar with Connie Lee
Pregnancy and Cavernoma with Professor Catherine Nelson-Piercy
zhlédnutí 288Před 2 lety
Pregnancy and Cavernoma with Professor Catherine Nelson-Piercy
Introduction to CARE Study with Professor Rustam Al-Shahi Salman and Mr Neil Kitchen
zhlédnutí 323Před 2 lety
Introduction to CARE Study with Professor Rustam Al-Shahi Salman and Mr Neil Kitchen
Minimally invasive approaches, cavernomas and decision making
zhlédnutí 497Před 2 lety
Minimally invasive approaches, cavernomas and decision making
How Cavernoma Grow : The role of a gene mutation linked to some Cancers (Science of Cavernoma)
zhlédnutí 541Před 3 lety
How Cavernoma Grow : The role of a gene mutation linked to some Cancers (Science of Cavernoma)
Fiona Holiday - The Elephant and The Thinking Brain - Emotions, Experiences and Well-Being
zhlédnutí 166Před 3 lety
Fiona Holiday - The Elephant and The Thinking Brain - Emotions, Experiences and Well-Being
Hi Roxanna, same story. Just two weeks ago went to the ent for right ear tinnitus and he told me nothing to be worries but we found a cavernoma . 2015 wasn’t detected when I had an mri scan done. Thank you for sharing this will help me to try to think about it in a different way. Dani
I want a copy please, my wife has it
Thanks for this info. ❤🙏🏽
Thank you also for sharing your story, sounds like a similar experience with my first neurosurgeon. Bedside manner is/was the same 🙈
Sadly it does seem to be fairly common.
Love this
Stay strong girl . God bless you .
Proud of you Jade ❤
Thank you for sharing your story Jade. My daughter and I both have it them too.
Love this great story 😁
Thank you.
It’d be lovely to hear how Kay is doing now. Did she go back to college?
Thank you for sharing your story. Mr Kitchen is brilliant. I’m so glad you didn’t take that first surgeons advice.
Thank you for your comment.
Love this
Thank you so much very helpful
I know it's playing up when I get Random HICCUPS for no reason associated with Food or Beverage intake
I don't have a CAVERNOMA STORY Yet. And all the Relief & Validation that arrives with a Clear Diagnosis. Not to mention Treatment Options & a sense belonging to a Community Society or Alliance Group or any ENTITY of Empathic Gathering of Kindred Spirits I have a SPECULATIVE Story though. It's like a Horror Story. A Steven King Movie. Even a Spy Agency couldn't manifest such suffering. But then AGAIN maybe they could & DID & THEY chose Me to DO IT to. Lucky Me in the United States of Australia eh!
I'll tell You & the Spy Agency what I've learned from my Horrendous Torturous Travails. {Pain Hurts & Fear makes You Scared} That's it. Nothing New Under the Sun regarding The Human Condition® and the Propensity for Violence Variously theirin.
I DO KNOW that Ice Pick Headaches are Derived from the same Root Cause as Why my Brain tricked me into thinking ALL my Teeth were Getting Infected like Domino's. Not that DOMINOS make anything Derivative of a Naturally occurring Pizza with Soul. More akin to Formulaic Hot Glup for easily coerced Millennials. But that's me being Cynical in this Hot Messianic Mess of a World with MEATYDATA Toppings & Heat triggered Myoclonic Seizures & Grey~Outs & Blackouts. HILARIOUS
Maybe I should have Gratuitous Sex at "The Harem" across the Road? That'd be a Riot for the Girls with Intriguing names. Me with No Teeth & a Rollator looking like Grandpa. Intriguingly, That Sexiful Establishment was Where I had my First Encounter. My first encounter with a Scary NEUROLOGICAL EVENT in a Hot Bath in 2007. The Name's BONE, Michael Bone. Cooked & Seared in a Post Coital Hot Tub with an Exacerbated Brainhead as a Extra. (Not Funny at the time). I couldn't see or talk or Think properly and my Head hurt & my Tongue was Tingling & Numb & my legs Buckled as I got out of the Water. The Poor girl "CAPRICÖRNIA" was so worried for me. Then again It could have been "Perrplexxia" or "Daphne St Claire". Been a while. Then I sat in a child's swing in the Park and then my Head came Good. (Sorry it's Trüe) A very Tricky Day it WAS. Until I had A HOT BATH at home without any company And IT 🔥🧠💥 HAPPENED AGAIN.
Yes I'm channelling Benny Hill.
And LIKING MYSELF 👍
As a retired neuropsychologist who a first big bleed from a cavernoma in the the left cerebellum when 71 I’m on the personal medical side. Having a well organized approach and mindfulness are important. After that some at least mostly nonjudgmental friends and informal support can help. I also had never seen a cavnoma patient in decades of work with older adults as the majority are younger people. In that regard this is a most devastating diagnosis. Therapy therefore needs to be aware these patients are dealing with ongoing loses. Friends and family will be dealing with loss and may have to make hard decisions. Letting of all shoulds finding meaning can be done but meaning needs to be defined by the individual. Usually also means letting go of expectations. In future presentations may be helpful to better define what a cavernoma is I.e., small cluster of capillaries. You seem like a sensitive young professional. Keep up the good work
May God bless you and fully restore you
Most important for caregivers to know is the location
Semoga segera ditemukan obat untuk cavernoma, dipublikasikan ,dan diproduksi
Thank you for this information and conversation. It was very helpful and gave me my first positive lead for health related to CCM and what I can do about it.
WOW, I'm 32 and have a cavernoma in my right temporal lobe which bled at an unknown time. Never (!!) heard of anyone with the same diagnosis including epilepsy and focal seizures - so interesting to hear Emily's story! Thank you so much it gives me hope. All the best, Emily
Thank you for this. And thank you, Emily. Just keep going. I had my cavernoma removed through laser when I was 28. My daughter was 3 yrs old. I'm 49 now and from the Philippines. Thanks everyone!
Hope you’re treatment has gone well Elliot! Thanks for your video , good luck for the future young man👍
I had a eye melanoma treat with gamma knife at Sheffield teaching hospital.The staff there were really the best I could have asked for , I was also worried about the frame fitting and injections around my eye before the frame fitting,but have to say that out of ten I had given it in my own mind it was all more like a two.I know it’s not a nice procedure but not as bad as what I thought it was going to be So thanks to all the staff you were all very professional and caring
Can u cure cavernoma permanently without surgery😢
How cavernoma looks like if you have many? And how will remove the cavernoma if you have more than 1?!
when's the next cavernoma Alliance video meeting (zoom call only had 1 and forgot how and when to attend :) my symptoms are unbearable x
Just came across your video what a beautiful lady you are just by watching this short video of you the vibes I got from it are I can tell your a caring helpful basically you would do out for anyone I wish you all the best in the coming future n have a lovely Christmas n all the best for the new year my lovely xxxxxx
Thank you for sharing your experience with CMs.
Thank you so much.Sad that you are ill, hope you are better now. It must have been so stressful.
❤
Thanks for this
Inspirational to have 2 surgeries and live your life masking pain but having weakness in body. Knowing bleed potential.
Gorgeous expression of your feelings there Emily. Thank you
Articulate and delicately expressed. Thank you
Thank you for sharing; very similar to me. Seven years post 2nd surgery.
gene needs therapy
💛 Obulu (thank you) for speaking shared experiences.
💛This really helps me, Obulu (thank you)
Thank you for the knowledge you share , it was helpful for our practise
Our God is greater and He is in control❤️
My husband also have cavernoma, it cause him seizures and catatonia, we are suffering 😢
My husband also have cavernoma, it cause him seizures and catatonia, we are suffering 😢
Air flight may be safe but does sexual intercourse affect more bleed in male? There is currently a small bleed and I’ve been discharge from hospital for wait and monitor currently. I feel ok and there are no disability presently. There maybe a bleed and it has bled twice now.
How to cure Covernoma illness.without surgery.. surgery is very risky.. my Son have Covernoma
my Son have also Covernoma..how to recover this kind of illness..hope you can give me information how to avoid
This has been very informative! I had a question about combat sports and cavernomas. I have a hypothalamic Cavernoma that has bled and want to know your thoughts on this situation? One surgeon I've seen has said flat out no and one has said there's no evidence to say it'll become worse from head trauma...but I'm still not sure. 😅
I just watched this, and it was so informative! Thank you
Thank you so much, great video!
What's her email?