The Alliance to Cure Cavernous Malformation is an organization by and for those affected by cavernous malformation (cavernous angioma, cavernoma) and their loved ones, health professionals, and researchers. Our mission is to inform, support, and mobilize those affected by cavernous malformation and drive research for better treatments and the cure.
In May 2022, our organization changed its name to Alliance to Cure Cavernous Malformation. Videos created before this date use our original name, Angioma Alliance.
www.AllianceToCure.org/
Disclaimer: The Alliance to Cure Cavernous Malformation does not have control over the ads that RU-vid selects, nor do we receive funds for advertising on our RU-vid channel. We have no relationship with the entities advertised on our channel.
I have a cavernoma in an area in the brain where as the neurosurgeon said, the complications from removing is greater than the complications it can cause from bleeding. Also, he told me to aboid blood thinners. Problem ia that i have lupus and antiphospholipid syndrome, and basically was prescribed aspirin by my reumatologist. Basialy i find myself in a dead end and have no idea what i should do..
Thank you so much for this upload, I learnt so much from this, we have a daughter with multiple CCM's and multiple daily seizures who is not responding to any medication. Unfortunately surgery is not an option because she would be hemiplegic then, the (part) removal of the CCM was already challenging. We're going to try keto diet now and hope for good results. Greetings from Switzerland ❤
Is there anyone I can ask about CCM1? as I am seeing a neuro Dr at UC Health in Colorado I am a descendent of Captain Cristobal Baca but when I ask about CCM1 the Dr's do not know about it and blow it off.
So is this treatment a prophylactic for Familial Cavernoma, like taking Fluoride when you're a Child? Or does it Shrink the Cavernoma so you're totally well again & can board a flight from Melbourne to Helsinki & get away from the Gangsters to peace & quiet where no one would bother me. Hopefully.
I am a person from Belgium. I had bleeding from a cavernoma with failure. I had surgery a few months later. I still have a small cavernoma. I always thought that Covid might have something to do with it, but it was only reported in Belgium a few months later. I have to be careful with anti-inflammatories, but never heard about blood thinners.Are there anything else we can look out for? Thank you for your research. And for passing on the information worldwide.
Great video to raise awareness!!! I had little idea about this serious condition. Connie Lee seems like a very caring and serious person. I hope in the future there are better therapies for people suffering from CCM.:(
Plsss have a cure for this. And also why cavernoma recur after excision? Enlighten us about this? Perhaps it is a tumor form by blood or vessel? What so ever. 😢
I really dont understand this malformation? If you diagnose multiple cavernoma, does it mean you have many in your brain in different location? If 1 of them has bleed, need to remove?
Thank you for sharing your story. In Australia there are no “centres of excellence”, the alliance is the main source of support for me. Showing my family other people and their stories helps.
You are so brave to put your story out there only a year after your surgery. I had mine in 2002 when I was eight, and I didn't want anything to remind me. I just wanted a normal life. I first joined the Alliance because something big happened in 2021, and I now wanted to help people with CM. I am so proud of you for taking that step in the right direction!
You are not alone. You are amazing and so brave. I too had a stroke and left with symptoms. Unfortunately I couldn't get the surgery. I'm in NYC. Thank you for sharing your story. I wan to help bring awareness to this, I just dont know where to begin.
So exciting to hear how far the group has come since I joined in 2019! Back then it was relatively unknown as a disease so trying to get a diagnosis or even a doctor who was aware of CCM was a huge undertaking and required extra efforts on a patient’s part to educate them. I will always be grateful that through the Alliance’s work, I was able to get genetic testing for me and from that, for my children. I cannot describe the feeling of opening a letter from the genetics lab and reading that NEITHER of my children have CCM. The familial CCM2 abnormality stops with me. Thank you Angioma Alliance and Malformation.
I’m so happy to see the progress you all have made! I knew someone affected by Cavernous Angioma, and I know they’re always happy to hear all the good news from the hard workers on the team ❤
I just found out too and they are giving me seizures no one has ever heard of. Doctor is throwing meds at me trying to see which ones work. smh Thank you for bringing this to light.
I just started getting my headaches again after taking iron pills just two weeks ago and I think you may be onto something but the expiration date is for 10/23
@cordeliaallen33 Sounds very familiar. :) They found my cavernomas by accident in 2009. I'm 35 now. How do you know that you only have it since 2006? I was told you have it or them since you are born. Is that not true?
@@Cliohna I had a seizure back in 2006 and that’s how they found it I’m sure I had it since childhood because I always had really bad headaches at 8-9 years old.
@@cordeliaallen33 Thanks for sharing. :) You're really the first contact I had with someone who also has this condition. Take care and greetings from Germany. 👋
How many Human Clinical Trials are planned? - are more than one group looking at this to go to Trial ? Does FUnding Exist to get this through Clinical Trials ? Can the Treatment be bought into and offered into the Hospital/Clinic and Adopted without Clinical Trials ?
I have 4 children with this. Three with seizures and one daughter that has had 3 brain surgeries and a stroke paralyzing her right side. My son had brain surgery at 7 and has since had a stroke.
I have 4 kids that have these. Two have had strokes. 3 have seizures. After Desiree had her 3rd baby she started having more seizures. She’s had 3 brain surgeries and after the last one she had a stroke which paralyzed her right side.
Dr. Gary Steinberg at Stanford. He did my surgery successfully despite my suffering a grand maul seizure on his operating table. He did my operation on my spine which is the rarest type of CCM to have. I have CCM2 and have multiple of them in my brain as well. I had to learn to walk again. I had to learn to swallow again. I also have 95% function minus a heaviness and lack of sensation in my right extremities. I have this due to how expertly Dr. Steinberg did my surgery. He then advocated for me to ensure I got neuro PT/OT at neuroscience center build for him. I trust him implicitly with my ability to walk and care for myself independently. I trust him with my life. He put me into emergency surgery because I had hemorrhaged several times. Death or paralysis were real possibilities. He prevented this. My cavernous malformations vary in size. I was 32 about to turn 33 He knows my family’s history and sees their images too. He is constantly researching. His staff/nurses are too notch. He is also working on reversing the effects of stoke with patients as far out as years. I’ve never had a stroke but his work in neuroscience is nothing short of incredible, innovative, brilliant and any positive other word you can think of. I can’t recommend Dr. Gary Steinberg enough. He’s brilliant. I too think between the brilliant doctors like Steinberg and Connie’s Alliance, we will Hm find a cure.
Thank you for all you are doing to help so many people. A hero. Not every hero dies, but all heroes are willing to risk their life for the greater good. From El Paso Texas.
