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My daughter Heaven is 21 years old and she has Leigh's Syndrome T-G 8993 with 98/100%mutation complex5. Any suggestions for helping me treat her?

I have MELAS and seizures, cognitive decline. If I could stop one thing it would to never have anymore strokes

Thank you Becca for such a loving sharing of your beautiful family on Mothers' Day! <3

As someone who has MELAS, I appreciate and respect your family sharing this❤

I joined early on. I have MTHFR c677t... pharmaceuticals are not my answer.

Very nice to see this. I use the insight time app and am a doctor of divinity. Many thanks. DNA changes and breathing is especially powerful. 🙏🏽🦋🦋🦋🦋

so now we have an explanation for why children with autism do not look at the eyes, close one eye, or are hypo and/or hyper-sensitive. thank you

I was recently diagnosed with MELAS, thank you for sharing your story ❤

Is normal to feel pain in your teeth and swollen gums I have mitochondrial disease MELAS??

I'm MTDPS4B or MNGIE related PolG gene

Drug approval? Where do I begin?

Saw this podcast by chance-what posted on Luries Facebook page and clicked to see---ironically we are trying to figure out what is alien our child as we know she has some sort of metabolic disorder. The little bit that was shared in this sounds so much like our daughter. Thank you for sharing this as I am bringing it up with her doctor asap. We are on track now as her doctor also agrees that she possibly can have some sort of mitochondrial disorder….. I would love if there’s any other information websites or doctors we should reach out to. She is a patient at Luries but as she doesn’t have a specific diagnosis, so not part of any certain program or clinic yet.

I understand time is limited but plz slow down to where we can hear everything said.

Where can I get information on adults like myself?

Unbeliveble stupid.

Can you do a video on how to talk to your doctor if YOU, as a patient, suspect mitochondrial disease? Medical gaslighting is rampant in my community, and being a brown, obese, autistic woman doesn't help. I can't find anything short that a provider will actually look at during a 5-10 minute GP appointment, which is about all anyone ever gets nowadays. In this day and age, when providers don't have time to sit down and read an extensive paper or sift through a website, it is essential to be concise. Our research hospital (University of New Mexico Hospital) just made national news by getting an F on a Leapfrog assessment, and my neurologist has never done an actual neurological function exam in the three years I've been seeing him. He just interrupts me and tells me to talk to my PCP. This is the quality of care in the USA. Please help.

Propofol almost killed me. I cannot have it ever again.

There is a rx CBD, I don't remember the brand name, I was checking the scheduling of new meds and saw a schedule 5 cbd? Or a thc that's a C5?.... no it shocked me enough that I remember it was there. Like

Please get over it. There are genetics who don't tolerate medication. I use exercise.

Great presentation

Hopefully, one of the guests may read this. Q: How would you feel about making hyper alimentation available to the body? One of you mentioned quality nutrition being important, why not take it up a notch? Thank you

This is amazing I can’t thank you all enough!

🙈 *Promo sm*

Careful, that free cardiac test they give at the beginning is a doozy!

amazing

I would love to have some of those questionnaires.

When will American doctors take this seriously?

So how fo we no if its mitochondrial desease or dysfunction they say fybromyalgia cfs is dysfunction

I was diagnosed with MELAS. It took yrs for my doctor to get the proof of my MELAS. I finally was diagnosed with my genetic testing and 3 muscle biopsies. I‘ve crashed many times. This is one nasty disease.,

What are markers of oxidative stress? Dont know if have mito problems but anemia runs in family and have been trying to reduce again fatigue (which seems to change hourly to ok energy), by checking what foods help. In past, eating liver, but in last 2 years not crave it like before. ALso iron labs high in last year, but ferritin 34 (and high TIBC !). While researching possible high B12 meaning, papers out that many B12 lab analyzers use antibodies and if a person has those AB than incorrect results. They mentioned 500> is ok, that MMA urine lab is best if concerned about B12(or serum). It is also part of a OAT , so I might ask Dr to test that or buy it myself online. For folate , homocysteine lab (urine or serum). Can oxygen for this be measured with an oximeter?

my son has mitochondria KSS

i need help my son has mitochondrial KSS is there any treatment 😢

can my son participate he is from Egypt 24 years mitochondria KSS he can't walk alone has no balance can't write also

Thank you so very much 😊

Thank you UMDF for all that you do!!! xoxoxoxoxoxo

If you test negative for the r300.1 genetic muscle biopsy test do you definitely not have a mitochondrial disease? Or is there other tests for it ?

I was finally diagnosed bc I was sent to a younger neurologist who immediately suspected this is what was going on. So after genetic testing and muscle biopsies he was definitely right with his diagnosis. Now I have learned to live with it.

Anything for KSS??

I'm 56 years old and about 6 months ago I was diagnosed with KSS. I was told that I had a mitochondrial deletion rate of 50 percent. It's strange because it all started with extreme pain in my left foot and some weird blood tests. I had two biopsies and after the second one they were able to determine that I had this mitochondrial myopathy. The pain on my left side is getting worse and worse and I'm having trouble keeping my balance very well though it doesn't show a whole lot yet to most people. For the most part people just see that I'm limping. My syndrome is extremely rare and so I don't have a lot of people to exchange information with. It seems as if I'll probably die in the next few years of a heart attack or some other organ failure problem but right now my organs are working okay. My muscles have definitely been the problem so far and I've also had a huge problem with swallowing. I swallow are and saliva and foods and drinks improperly and end up choking all the time. There's no cure and it's just a slow deterioration. It's very hard to know how it's going to conclude but I'm doing okay in the moment.

Are testing like genova metabolomix helpful to know what needs help in nutrition> measures fatty acid, ROS, organic acid urine... ?

So grateful for this!!!!!

It's amazing how on-the-nose some of this stuff is. My whole journey started with extreme left foot pain and everybody thought it was caused by a back surgery I had a few weeks before the pain started. Luckily or unluckily my blood tests were really strange and my primary started thinking that I might have some form of mitochondrial myopathy. I had an initial biopsy in my right thigh which sowed some strange things but they couldn't put it into the lab at the category at that point though everybody was starting to think that was going to be the answer. I had a second biopsy into the already damaged left foot and a geneticist came back and told me that I had KSS. I won't go into detail because you can just Google it but it's a pretty crappy diagnosis to have. It's a deletion of the mtdna which causes all sorts of muscle and organ problems. I'm glad that I know what it is and that my primary doctor kept referring me over and over to different specialists until we finally found out. By the end of it my primary had left the clinic and I was with somebody else but I was very happy he was there to help me move through the system and get a diagnosis even if that diagnosis was bad news.

My daughter had feeding, fine and gross motor developmental delay. Balance problems. She is 30 now she has 8993tg ragged red fibers elevated lactic in acid CSF fluid. She also has RP. Hearing loss her mri shows basal ganglia is showing.

Leigh's

Any questions just ask

I have disease and 41

I can't get the sound to play. I would really love to hear the information!

Ok, why is it we are supposed to trust doctors feelings, and data that does not include mrna vaccines, OR mitochondrial disorder and apply that data to mito disored and mrna vaccines ? just some feedback here.....it dosent encourage people with mito disorders to take gene therapy aka mrna vaccine technology seriously.

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