Living with Mitochondrial Disease
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- เผยแพร่เมื่อ 1 ก.ย. 2008
- What does it mean to live with mitochondrial disease?
One in 4000 adults and children have mitochondrial disease ("Mito") and more are being diagnosed each year.
Watch the experience of 4 different people whose lives have been changed by a disorder and a disability that affects the powerhouse of the cell. Their disease may be invisible, but their challenges are great.
Learn more and make a difference at www.mitoaction.org
Produced by:
Wendy Fine: Producer
Nahid Shahabi: Assistant Producer
Corey Sheehan: DP
Zeen Rachidi: Editor/Lighting
Kevin Mee: Sound/Grip
Nick Cali: Sound/Grip/ Assist. Editor
Evan Warren: Second Camera
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I too have Mito. My parents knew something was wrong at about age 5. I'm now 28. My symtoms are as follows. Extreme pain, low weight, very tall, and no energy. Top that off with narcotics and you have a nocturnal zombie on your hands. My girlfriend left me because of it all. Does any of this sound familier to anyone out there? I feel very alone with this disorder. My body is a prison.
I have Mitochondrial disease and a G-tube (feeding tube). I've been dealing with it for years now and I really worry that it may be stuck with me forever. Its really hard seeing all my friends being able to carry out their normal and energy filled lives, while I just can't keep up. I'm slowly learning how to deal with it, but life is still a big struggle. I really pray that one day people will find a cure, because no one should have to go through this. God bless Mito sufferers.
really sorry.. hopefully there is a cure one day
I feel the same way sometimes. I had a G Tube for most of my life
Cheers for this, I have been researching "cfs mitochondria" for a while now, and I think this has helped. Have you ever come across - Miyason Mitochondria Masker - (just google it ) ? Ive heard some unbelievable things about it and my friend got amazing success with it.
I also have mitochondrial disease and I completely understand the struggle on not being able to "keep up". It's very depressing.
Mine is mitochondrial myopathy
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).
I and my children have mito. I started a group over on FB, Mito Families! for anyone affected by mito. If you need others who understand please join us.
Hello. My daughter hash " mitochondrial dysfunction."
Wecare lost and dont have anyone tovtalk with. We dont have facebook....how can we connect? God God Bless
How can you get diagnosed
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 TH-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.
This is very well done and really does a fantastic job of letting people know the path that those struggling with mito are walking and that they are not alone....
I have had symptoms for years but no insurance to find out what was wrong. At the age of 53 I found out I had cirrhosis of the liver and my spleen is failing. After many blood test they finally found I had Mito which explains everything. My muscles are weak, dizziness, nausea, swollen legs and ankles, muscle spasms and loss of sight and many trips to ER for kidney/bladder infections. I had to quit my job because I cant walk very well now. I am waiting on more test to find out I have ragged red fibers. It takes a lot of time and patience but I have a positive outlook.
You sound like you could ve given a lot of antibiotics. If one of them was cipro or levaquin then check out floxiehope.com or fqwallofpain.com.
It's May, 2023 and I found out about this disease on this day, Tuesday the 16th. Wow. 😮 I've experienced some of these symptoms and have the dizzy and nausea regularly while I've also been underweight for over 10 years. During infancy I had a long phase not growing and wore size zero shoes at two years old. My kidneys and urinary system was reconstructed before I turned 3 and I began natural development. During childhood I'd be underweight for a small season of time in random phases and be sickly and weak no moving around much. At other times while healthier I'd be chubby and vivacious, even hyperactive. I didn't know it was a actual disease. I thought I just had some birth defect with urinary and was small and short because kidneys had trouble. Wow.
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.
I was told I have it then another doc said it's fibermyalgia ,but I dot think it's fibermyalgia
@dmberry1001
I lost my husband 13 days ago to MELAS. He was diagnosed in 2007 (at age 53). I am searching for other MELAS families to connect with.
My name is Crystal and my husband's name was Danny.
Thank you so much ~
So sorry for your loss. I found out through muscle biopsy that I have a mitochondrial disease, but I don’t know which one yet. I am 48 and although I have been unwell for years, I have had a very steady decline in the last year and find it very difficult to manage even driving my three kids to school doing a little around the house and picking them up. But I am so sorry to hear that you lost your husband. I hope you have found peace.
My deepest condolences 😢
My neurologist is suggesting MINGIE 😢😢😢
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! 🙏🏼❤️
My son was diagnosed with MELAS at age 25.
2:40 very sorry 😢 how is she now?
@falseprophetbuster1 i have a mito disorder and i am 18. I was just diagnosed a year ago. For younger children they are born with a known defect and most of the time have a higher severity level then others. The reason some adults develop mitochondrial disease is because the cells become tired and do not function properly causing lack of energy.
This video may help explain that a little better,("the way energy is made".)by mitoaction
I have mitochondrial disorder, I recently started coenzymeQ10 I have dad 7 surgeries in this last year :(
i have micicondrea i an 11 and i can not see very well my balince is of and i am loseing my hearing it has went down threw my dads side
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.
@morgenswifeholly I am 38, recent dx. I have had one son die due to COX IV and two of my other children may have mito to lesser degrees
Did you actually got the rights to play the 5th element soundtrack ?
Otherwise, interesting.
My cousin has this disease.
@morgenswifeholly I am reccently diagnosed
I have mitochondria disease I have had 11 surgeries
Me too
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.
A blood test doesn't test well for Mito. However I was diagnosed back in two thousand and two. The technology has gotten better, nowadays, a blood test could potentially test better than it did back in 2002:)
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