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MitoAction
Приєднався 7 січ 2008
Official Mitochondrial Disease Action Committee channel.
Organization goal is to Educate, Advocate, and Support patients of mitochondrial diseases, their caregivers, and all those whose lives they touch,
Organization goal is to Educate, Advocate, and Support patients of mitochondrial diseases, their caregivers, and all those whose lives they touch,
Відео
Mito Hacks: Self Esteem and Self Acceptance
Переглядів 1714 днів тому
Mito Hacks: Self Esteem and Self Acceptance
Mito Hacks: Mito and Transportation Tricks
Переглядів 414 днів тому
Mito Hacks: Mito and Transportation Tricks
Mito Hacks: How to Research your Doctor
Переглядів 814 днів тому
Mito Hacks: How to Research your Doctor
Mito Hacks: Sick Day and Rest Area Hack
Переглядів 1714 днів тому
Mito Hacks: Sick Day and Rest Area Hack
Mito Hacks: Feel the Feelings and Mobility Aids
Переглядів 814 днів тому
Mito Hacks: Feel the Feelings and Mobility Aids
Expert Series: Mitochondrial Disease and PMM
Переглядів 19814 днів тому
September 13, 2024 : Expert Series presentation with Dr. Amel Karaa
Expanded Access and Compassionate Use of Experimental Therapies
Переглядів 49Місяць тому
August 2024 Monthly Expert Series presentation from Dr. Mary Koenig
Congressional Brief- July 1, 2024
Переглядів 34Місяць тому
MitoAction recently participated in a briefing with the Mitochondrial Disease Caucus to update legislative members on the challenges of living with mitochondrial disease. MitoAction is honored to continue to represent our patients and families in raising awareness and our collective voices on behalf of the mito community.
2024 International Metabolic Conference - Thank You!
Переглядів 75Місяць тому
2024 International Metabolic Conference - Thank You!
Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options
Переглядів 992 місяці тому
Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options
Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue
Переглядів 1433 місяці тому
Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue
Understanding diseases of mitochondrial DNA maintenance
Переглядів 3694 місяці тому
Understanding diseases of mitochondrial DNA maintenance
The Cell Danger Response, Healing, and Mitochondrial Disease
Переглядів 1,7 тис.5 місяців тому
The Cell Danger Response, Healing, and Mitochondrial Disease
Modeling mitochondrial diseases with patient-derived stem cells and brain organoids
Переглядів 1357 місяців тому
Modeling mitochondrial diseases with patient-derived stem cells and brain organoids
Leigh Syndrome: A Factory for Making Viruses?
Переглядів 1137 місяців тому
Leigh Syndrome: A Factory for Making Viruses?
FAOD: Adjunctive Management Strategies
Переглядів 528 місяців тому
FAOD: Adjunctive Management Strategies
Cats understand a lot more than people sometimes give them credit for. I'm sure Milo understands that, when you're in pain, him being with you makes you feel better.
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Lots of people are finding success with the reduction of glutamate - through Brain retraining - nervous system regulation exercises. ( ME/CFS, long Covid people )
God this drug is taking forever to be approved/released. There are millions of children suffering right now, is there no way to bypass the slow FDA?
Could you pls spell out acronyms - many of us are looking for answers but cant tell if we are in the right spot without knowing the acronym. just having it in the description
Is huntington's disease curable
Really good watch
can you direct me into sunshine effects on mito and a first aid perspective from a mito point of view?
I heard cannabis is bad for sleep quality and mitochondrial function.
Thanks!
Thanks!
Thanks! Great presentation!
Thanks! Great presentation!
'Promosm' 😌
thank you
Um abraço ao dr. Michio Hirano 💚🐢
Um guerreiro que nos inspira a lutar sempre! Somos mais de 26 pacientes diagnosticados aqui no Brasil 💚🐢
Many thanks for all the work Dr Gillingham and and MitoAction do for us LCHADers around world ❤
Great presentation, condensate so much information in an easy to understand format!
I was told I have it then another doc said it's fibermyalgia ,but I dot think it's fibermyalgia
It's disgusting all the rumble in the crowd... have some respect!
You are so brave and strong 💪🏼❤
Great to learn about the app yestersu. I think the less counting the better, because 1. Dietians job is to count the macro nutrients, patients likely to make mistakes 2. Query is it appropriate for teens to be calorie counting when they are already restricting, could this set up obsessive behaviour or increase health anxiety around diet 3..some FODs cause vision loss so counting and logging so many items is not possible as we often cant read food labels as we get older 4. Perhaps focus on symptoms more alongisde the key dietary items such as mct or c7 dose, EFA dose, fat soluble vitamin dose. 5. Add option to include item of emergency protocol e.g dextrose powder drink or gatorade
Melanie has done the most amazing work on Lchad, all so valuable for us as patients.
I hope you are doing better 🙏🏼🙏🏼🙏🏼
Each time I was taken to the hospital, they kept telling my parents that I had a cold or the flu. When I was two I wore size ZERO shoes and was so weak I couldn't hold myself sitting upright to have my birthday cake. My mom held me so I could sit in front of my birthday cake and have a photograph taken. I was too weak to smile though. Now I'm 52 years old and this coming Thursday is the 18th my birthday. I'll be 53. I'm still walking but it's hard to keep any weight on me. I'm skinny now but I've done skinny plenty of times. I've been chubby lots of times too, even got FAT before. I didn't realize I was so fortunate, that it's harder hitting than I've experienced so far. I'm not too happy to learn this IS A REAL disease and I've had it's symptoms since birth and they might get worse. Dang.
2:40 very sorry 😢 how is she now?
Hello beloved always remember we must repent of our sins (sin is transgression The Law Of Yahuah The Father in Heaven. The Law are The Books: Genesis, Exodus, Leviticus, Numbers, & Deuteronomy). We must repent of our sins and Have Belief On Yahusha The Messiah. HE Died and Rose three days later so that we can be forgiven of our sins! Come to HIM Today. Much love!
شكرا لكل الجهود التي يتم بذلها في هذا المجال النادر اتمنى اضافات لاحقه عن العلاقه بين الصرع وأمراض الميتوكندريا.
Been taking 1mg lithium orotate daily for months. I guess the annoying thing about lithium is it doesn’t stay long in the body (1 day) so brain increase in mitochondrial atp or nerve growth factor is temporary. Also it doesn’t raise my workout energy, which I guess means most of it is being absorbed by the brain, and you can’t take more because then you get toxic concentrations in the brain. Regarding micro doses, 0.3mg daily was used here: Microdose Lithium Treatment Stabilized Cognitive Impairment in Patients with Alzheimer's Disease, 2013
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So this poped up on my genetic test (Tellmegen) I am 30 years old. Should I be really worried about this I have a family history of diabetes and never have had a high reading of enzymes or anything with my liver but I developed PVC's at 29
If you have a fatty acid disorder you need to know which one and get it treated
@@jibbyjabs I think the one it says I am missing is like SCAD or Short-chain acyl-CoAdehydrogenase
I have adult onset SCADD which no one talks about. I’ve been trying to get an appointment with doctor vockley as well and his staff have been making it very difficult to get in.
@@rocpile2773 because he can do nothing for you. he treats huge volumes of sick people with serious disorders. SCADD is clinically not, there is no treatment, he can do nothing for you. It isn't considered a disease that can cause symptoms. He has to focus on patients who have serious disorders. Also it's very unwise to denigrate a doctor and their staff online if you want their help. He is involved with MitoAction and so are the staff involved with running this channel. Really not a respectful thing to do to someone who's dedicated their life to helping so many patients even the international ones.
My acetyl carnitine profile test shows c16 and c18 are high. But no digonse in whole exome sequencing for fatty acid disorders or any other! Is there any other fatty acid disorders other than known till date.
Hi, nice to meet you. I am very new to this community. I look forward to more. 👋😀
Welcome to the community.
God Is So... Good !!! 🙌🏽 One Day At A Time ♥️
This is very interesting, thanks for sharing this. I think it elucidates a huge anatomical link between the Eyes and Fat-burning. I think there is a big link between our Surfaces (Eyes, Skin, Gut) and Mitochondrial Metabolism.
Just a note on production… When I worked AV I would usually set up a direct audio feed from the sound system, which gets you better sound quality. Is there an alternative medium to get the recording? Thanks.
I have mito as well your described my life to a t .. stay strong and keep sharing your story
I have a diagnosis of ME/CFS, and I’m not Co concede. Following symptoms are as follows. Can anyone give me your opinion please? . Extreme muscle fatigue in every muscle (even throat muscles) - Simple tasks as lifting my arms and using a towel is exhausting, which leaves me with delayed onset muscle soreness. . Heat intolerance. . Autistic- like symptoms . Severe sensory overload (I was housebound with this symptom). . Pain in almost every joints. . Arthritic-like hands (deformity). . Inability to understand lyrics in music. . Mute-like conversations. (Talking is exhausting and I feel depressed).
Thank God for Sandra's doctors to even think about the possibility of a mitochondrial disorder! In my 20's when my seizures "didn't make sense" a Neuro suggested psychological causes. Now at 55 genetic testing was done and 5 different gene variants were identified. MELAS and (an adult-type onset) Leigh's syndrome are being considered. Can't even imagine how many other health mysteries may have been solved with genetic testing. Prayers to all! 💜
P.S. a new spectral analisis can determine the % of functioning mitochondria is basically a brand new lab developed in EU Zone 1. The fluoroquinolone adverse reactions 55 taken for the study from these antibiotics and all had damages some down to 10% functionality very sad.
These are a primary reason for mitochondria damages check your medical history all here in this channel chat. ua-cam.com/video/OqESDLvPAaE/v-deo.html
The term mitochondrial disease is a bit of a misnomer. it should be mitochondrial diseases, there are roughly 20 types of mitochondrial diseases. i have MELAS syndrome which is a type of mitochondrial disease from a mtDNA A3243G mutation which onset when i was 35. There are 17 mtDNA mutations that cause MELAS syndrome alone. i'm 42 now. My MELAS is inherited. i followed my dream to live in Japan. In Japan MELAS syndrome has an intractable Disease status. Anyway, i don't have much time. But i have 2 cure ideas. 1. ask Google's Deep "protein folder" Mind, to find a a nutritional diet that would mutate mutant mitochondria into a normal mitochondria with normal mtDNA. the only thing is the diet would have to be individually tailoered and calculated and Deep Mind would have to be trained with knowledge on digestion, nutrition, chemistry, and mitochondrial DNA and yor mutant mitochondria. mtDNA is circular DNA like bacterial DNA not double helix like DNA in the cellular nucleus is. I don't know if mitochondrial toxins would be used or not in order to cause mutate the mutant mitochondria nor do i know if it would have any unwanted side effects or not. That's up to Deep Mind. If you change you internal environment, it might work cause as Robert Sapolsky says "There's no such thing as a bad gene. There is such a thing as a bad gene-environment interaction." So we change our internal environment to make our mitochondrial genes adapt to our current environment. The next cure idea is to use nanotechnology to make a nano-Ligand that injects ROS into the mitochondria. a Ligand is something that brings a molecule to receptor on the outer cellular membrane of a cell. ROS is reactive oxidative species or in other words cellular rust. ROS also acts as a signal for ParkinPink1 molecule to attach to a mitochondrial autophagy or mitophagy receptor on the outer membrane of mitochondria. Mitophagy is researched by Dr. David Lee in Southern California, according to my mitodoctor who is a MELAS syndrome specialist and a MELAS syndrome researcher, here in Japan. Mitophagy is the cell's damaged mitochondrion recycling system. In mitophagy the molecule ParkinPink1 attaches to a mitophagy receptor based on the amount of ROS inside the mitochondria which is a by product of ATP synthase. In mitophagy, a membrane develops around the mitochondrion with a libosome which breaks the mitochondrion down into amino acids for spare parts for the cell to use. Anyone need a brand spanking new endoplasmic reticulum or a Golgi Apparatus? Typically, mutant mitochondria do not under go mitophagy, because no ATP, no ROS by product. Now mutant mitochondria can reproduce or undergo mitochondrial genesis. Fun Fact: Fasting can cause universal mitophagy and mitochondrial genesis. And since mutant mitochondria cannot undergo mitophagy but they can undergo mitochondria genesis, just like normal mitochondria can undergo mitochondria genesis So i posted 2 cures on this please repost it in the FB mitoaction page. by Jeff Johnson. I don't have a Facebook account because of a hacker who posted 100 plus space alien internet articles on my Facebook wall as me. Even though it wasn't me. Plus the hacker, deleted all the articles 15 minutes before my wife got home. i used to be a regular poster on mitoaction on Facebook since 2014. I made a brief appearance in February for 2 weeks. Under a different name. i think it was my wife's FB account, because she had lent me her tablet. Anyways, run these cures by some mitodocs please. the more we talk about a cure, the more of a chance we have at making it a reality. i think next year most governments will be short on cash because of covid19, dead and lockdowns mean no public service work. So less money in their honey pot. So finding a cure for mitochondrial diseases we could go to work again and pay our income taxes to governments which they would be low on Anywho it would be a situation win-win.. PS please follow lockdown rules, it is for your health. mitos have a weakened immune system and tend not to survive covid19. Peace.
look into the ketogenic/paleo diet for mitochondrial disorders. there's studies on NIH PubMed showing it helps bypass some of the metabolic bottlenecks and cut down significantly on cellular oxidative stress.
@@stargazerspark4499 Thanks for the advice. Iron creates oxidative stress. I've looked that on pubmed.gov. . my sister is a vegetarian.and MELAS syndrome symptom free for now.. I couldn't live off that. i am an omnivore i have molars and bicuspids, and incisors. for eating My sister had to break her vegetarianism in order to have children. she had miscarriages without animal protein. The paleo diet makes scene to me. it is what our ancient ancestors lived off of, . meat and veges, they did not bread with meat. that might have caused dietary problems. the western diets. and the changing of diets with the latest fads cannot be good for the body. you are what you eat genetically speaking. you are what your grandmothers ate epigenetcally speaking, DNA interacts with it's internal environment, i could not live off the ketogenic diet. . the Dr. Wahls protocol tends to make sense, avoiding MSG makes sense. MSG is mislabeled as a "Natural Flavoring" for a business reason on things .Think about That for a while. MSG is mitotic. , My Melas Syndrome special is mito toxic cthe ketogenic diet. to his patients, i will talk to him most likely in 3 months.. My wife needs to get out of the hospital first. -j .
My Melas spcialist has recomended that i avoid caffeine.That seems to be good. except for the withdraw.
I have mitochondrial disease and am a medical marijuana patient. It has been a huge huge help in quality of life!!!!!!💚💚
I heard marijuana consumption impares mitochondrial function and causes low quality sleep.
Anybody had their mito damaged after intake of a prescription drug such as cipro or levaquin? These drugs belong to a class of antibiotics called fluoroquinolones and can damage your mito BIG time.
Yes!! I’m dealing with symptoms but none of my drs will diagnose it!! I’ve done my research and understand what’s happening now. This is a slow murder!!! The drugs causing this should never be used ever!!!!
@@catherinesandell6602 So sorry to hear Catherine. Hope you did find some healing along the way. I agree with you it is slow murder of the most terrible kind straight from hell.
@@edwinkok6323 Prayers for you on recovery and just getting through each day! 🙏🏼❤️
it's hell. there is no real treatment. depending on the type of mitochondrial disease you have. umdf.org/types/
They should be ashamed, having all these conversations and not paying the least bit of attention to her.
Exactly i felt soo bad
Hang in there!!! I am 73. When my KSS was instigated by Navy OCS, I was 22. At the age of 45, I had to finally quit working, with a wife and 3 children. At that time, only 200+ cases were diagnosed! Hang in there!!!!!
i'm 37 and i have a lot of the symptoms she's talking about, but endless amounts of tests have not been conclusive. i had to quit work 4 years ago. how does disease like this get discovered and diagnosed?
53 yrs young and a muscle skin biopsy gave me some labels. I wanna hug this girl. Much love and prayers! 🙏
Did you actually got the rights to play the 5th element soundtrack ? Otherwise, interesting.
My younger sister (now 15) is in a wheelchair she cannot walk nor talk she understands and lol definitely knows how to get what she wants by crying or reaching sometimes I let her pick out her own clothes lol she has good taste. Ayshia was diagnosed with Mitochondrial Disease at the age of 4 after a seizure and going into a coma for 6 months. She was fine before. Ayshia has gone through 11 different surgeries( I think... not really sure). I was 8 at the time and didn’t understand and also blamed myself for not being able to protect her. I just understood that my younger sister, my bestfriend, wouldn’t be able to run around and play with me again. The thing I admire the most about my bestfriend is her smile and her ability to light up the whole room with her laugh. Ayshia used to have therapy and a nurse but we no longer have one because we didn’t “qualify.” Ayshia is really stiff and we can’t afford her surgeries just came out of homelessness. Imagine living in a one bedroom apartment with 8 people and one of them is a baby and one in a wheelchair. I am now 19 and I want to become a doctor to figure out what really is wrong with my sister because I don’t just believe it’s Mitochondrial Disease it has to be more I just know it. Sorry for writing so much😆🙈 got a little carried away.
Growing up with a younger sister with disabilities must have been hard on you, but you are a good sister to her and you shouldn’t have to apologize, one of these days. it could be genetics, and she could have more than mitochondrial disease.. have they ever suggested where you could get her help, I watch a UA-cam video on a little girl who has it and how they care for her. They adopted her, the dad takes care of her, she has many seizures a day, she is very ill. If you ever want to talk write me back. Love to hear from you.