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Cavernoma Alliance UK
United Kingdom
Приєднався 8 лип 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
Lived Experience Panel chaired by Alex Ford (Annual Conf 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 during our Annual Conference 2024
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 during our Annual Conference 2024
Переглядів: 84
Відео
ROCK2 Inhibitors with Ovid Therapeutics and Graviton
Переглядів 5621 день тому
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 c...
Focused Ultrasound with Delaney Fisher
Переглядів 2821 день тому
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 c...
The CARE Study with Professor Rustam Al-Shahi Salman
Переглядів 6121 день тому
The CARE Study 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 Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma. For more in...
Kim Larkin - Personal Independence Payments (PIP) and Cavernoma
Переглядів 208Місяць тому
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 - eno...
Predicting Familial Cavernoma Progression using BioMarkers
Переглядів 90Місяць тому
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
Переглядів 2,8 тис.2 місяці тому
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
Переглядів 1,7 тис.2 місяці тому
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
Переглядів 5554 місяці тому
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
Переглядів 2484 місяці тому
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
Переглядів 338 місяців тому
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
Переглядів 2669 місяців тому
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
Переглядів 19610 місяців тому
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
Переглядів 339Рік тому
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
Переглядів 101Рік тому
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
Переглядів 723Рік тому
What is the latest research telling us about what medications help? - Connie Lee
Paediatric neurology and what the future looks like - Dr Greg James
Переглядів 276Рік тому
Paediatric neurology and what the future looks like - Dr Greg James
Gene therapy - What is it and how might it help people with cavernoma?
Переглядів 110Рік тому
Gene therapy - What is it and how might it help people with cavernoma?
Emily's story - left temporal lobe cavernoma
Переглядів 1,8 тис.Рік тому
Emily's story - left temporal lobe cavernoma
Steve Cairns - Recovering Movement Following Stroke & Brain Surgery, a New Perspective
Переглядів 367Рік тому
Steve Cairns - Recovering Movement Following Stroke & Brain Surgery, a New Perspective
Dr Shelly Stevens - The Gut - Cavernoma Connection Emulsifiers and More
Переглядів 890Рік тому
Dr Shelly Stevens - The Gut - Cavernoma Connection Emulsifiers and More
Let's Talk Cavernoma - Bleeding and Stroke Explained
Переглядів 5 тис.Рік тому
Let's Talk Cavernoma - Bleeding and Stroke Explained
Forum 2022 - Dr Anita Rose - Cavernoma and Anxiety
Переглядів 3192 роки тому
Forum 2022 - Dr Anita Rose - Cavernoma and Anxiety
Forum 2022 - Dr Helmut Bertalanffy - Brainstem Cavernoma
Переглядів 9492 роки тому
Forum 2022 - Dr Helmut Bertalanffy - Brainstem Cavernoma
Forum 2022 - Dr Grace Vassallo - The future of paediatric neurology
Переглядів 1642 роки тому
Forum 2022 - Dr Grace Vassallo - The future of paediatric neurology
Moving Forward with Cavernoma Treatments Webinar with Connie Lee
Переглядів 7082 роки тому
Moving Forward with Cavernoma Treatments Webinar with Connie Lee
Pregnancy and Cavernoma with Professor Catherine Nelson-Piercy
Переглядів 2952 роки тому
Pregnancy and Cavernoma with Professor Catherine Nelson-Piercy
Mere words are not enough to explain my feeling for this video made. I’m not sure what difference it makes to share this but I’m just rather in awe of how there is someone out there who can share such rare similarities. Perhaps if you and/or others read this, you’ll find solace in the relatable stories… Funny enough, my name is also Emily… I’m 28 years old, from Vancouver Island; 2 years ago I suddenly started having tonic clonic seizures. My (wonderful) neurologist managed to find a cavernoma on the left temporal lobe of my brain through my MRI; not too far away from yours. My tonic seizures are managed for now with medication though I’m becoming drug-resistant with focal (absence) seizures etc. still present… and surgery is now looking more & more like our only solution. This is the first thing I’ve seen that has been brutally relatable and the grieving of your past life; the anger; the pride in where you are mixed with the pain of the past you loved is something that has pulled on my heartstrings more than I’ve ever felt. Thank you. All my love to you and all my other souls that feel even a little bit the same… Love to you all.
You can’t know anything. Until
I was just diagnosed with a spinal cord cavernoma at C2 and c 3 16 mm by 11 mm. Believe first bleed happened in 2021 most recent bleed within the last two weeks. first bleed caused the left side of my body to go numb over a period of 6 months or so The next one started with my right arm and progressed to my right foot and numbness from my clavicle down. had issues with walking and knowing where parts of my body was. tightness around the neck rib cage and belly button. after 2 days in ICU on steroids only numbness left is in my hands. well have repeat MRIs in 30 days and then an appointment with the neurosurgeon. they already are saying the risk of surgery is great compared to how I am now. fingers crossed no more rebleeds, but at least I know what to watch for.
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
Hi Dani, thank you for your comment. I was briefly in two minds about doing the video initially but I'm glad I decided to.
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 😢
Hey how he is doing now ?
@@maskigaming3156 good but still have epileptic attacks but overall he’s fine
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. 😅