My grandfather was Lucas Baca, I have blueish green eyes, and all colors of hair.
@MotifMusicStudiosАй бұрын
Thanks for sharing your story. Thankful yours was able to be removed and I hope you've had seasons of health to follow.
@minaspamboris57222 ай бұрын
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..
@lucylucy46572 ай бұрын
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 ❤
@benjaminbaca26182 ай бұрын
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.
@MichaelBone-hj7sr3 ай бұрын
Hiccups. I know things are not good when I have Random Hiccups
@jessli3694 ай бұрын
Could someone with a spinal cavernoma only be eligible for the trial?
@MichaelBone-hj7sr3 ай бұрын
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.
@baronhead4 ай бұрын
Very hopeful to see this process. Praying for a rapid development of success! 🙏
@k-drone1234 ай бұрын
Thanks for all
@WhatAmIDoingDave4 ай бұрын
I am so excited for the potential of this technology!
@beverlyleriche82535 ай бұрын
The best! Dr. MORCOS IS the most amazing man!
@hope4autism4755 ай бұрын
Tortilla chips are usually fried in toxic petroleum oils, better to make them yourself with avocado or organic extra virgin olive oil
@IngridSaille-iv6lp6 ай бұрын
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.
@mattyfatstaxs7 ай бұрын
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.:(
@mattyfatstaxs7 ай бұрын
Cool video!! Good luck 😆
@lianasarnov20117 ай бұрын
Rachael is awesome!
@EO7307 ай бұрын
Thank you for your vulnerability, for sharing and inspiring others with your honesty and courage!
@KarenAsburyBuck7 ай бұрын
Thank you for sharing your journey!
@GasparClimaco-o6j8 ай бұрын
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. 😢
@WhatAmIDoingDave8 ай бұрын
Thank you for sharing your story Brian! Your positivity is so inspiring!
@GasparClimaco-o6j8 ай бұрын
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?
@Don-vx6rz8 ай бұрын
Are cavernomas more common in women?
@oleblue564709 ай бұрын
This was a informative session . Thank you.
@kellyburton38399 ай бұрын
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.
@hannatodoer97079 ай бұрын
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!
@SunsetDreamms9 ай бұрын
How can I become an advocate to bring awareness to this condition.? I'm in NYC.
@allisonmintz43692 ай бұрын
Join the Alliance.
@SunsetDreamms9 ай бұрын
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.
@firuzanekinci-cole93599 ай бұрын
We are blessed that you are leading the effort! Please provide a link that I can share with friends and family so they can contribute.
@AngiomaAlliance9 ай бұрын
This is the link to make a donation to the Alliance, thank you for sharing with your friends and family: angioma.networkforgood.com/projects/160164-alliance-to-cure-cavernous-malformations
@nancywisnesky26949 ай бұрын
I am only 42 and have bleeding on the brain Cavernoma I mean
@nancywisnesky26949 ай бұрын
I have a Cavernoma in my head it's so painful I am on a waiting list to C a neurologist
@ksmomto277510 ай бұрын
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.
@moonjellyhq10 ай бұрын
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 ❤
@petercolon960211 ай бұрын
Interesting info
@lisamartinez608111 ай бұрын
Thanks for such great info and stories
@BLBell11 ай бұрын
Many Amazon freshs warehouse workers has this thing because 1000s of 5G devices in the Amazon warehouse 😢
@normasantamaria736511 ай бұрын
Where can I make an appointment with Dr Morcos?
@adriananeal70678 ай бұрын
Hi! He is now in UT Health in Houston TX
@alexa332211 ай бұрын
Very impressive man.
@merrygwolf4629 Жыл бұрын
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.
@cordeliaallen33 Жыл бұрын
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 Жыл бұрын
I actually have had a Cavernous Malformation since 2006 and I think I’m going to try and have surgery soon.
@cordeliaallen33 Жыл бұрын
I was 19 in 2006 and I’ll be 36 next month which is October 2023
@johnre5342 Жыл бұрын
@cordeliaallen33 do you get symptoms and have you been monitoring it over the years.
@cordeliaallen33 Жыл бұрын
@@johnre5342 I actually just got a new symptom and I go see Rohan Chitale on the 10th
@cordeliaallen33 Жыл бұрын
@@johnre5342 we should definitely have a conversation. I’d really like that.
@cordeliaallen33 Жыл бұрын
@@johnre5342 I also have a CAT scan of my brain 🧠
@quasarhi Жыл бұрын
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 ?
@cody9542 Жыл бұрын
"Promosm" 💖
@josephryan5716 Жыл бұрын
I want to know about Albertina Albert Baca. Who was her family? She was married to Manuel Gallegos
@vickialmond7910 Жыл бұрын
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.
@vickialmond7910 Жыл бұрын
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.
@vickialmond7910 Жыл бұрын
Is there over counter meds for pain?
@CarolOpitz Жыл бұрын
Wonderful news!
@allisonmintz4369 Жыл бұрын
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.
@leahlastimado8997 Жыл бұрын
I have CCM too. Hope you can help me. Im from Philippines🙏🙏🙏