Thanks for putting these up.

Hello, my prayers are with you all. I am 66 and lost my central vision 30 years ago Was diagnosed with Best Disease (genetic from father) and Glaucoma. Recently LHON was found in the Family. I think we are the only Family in the world with both these genetic diseases. I am going to start taking Idebenone (a CoQ10 derivative) Check it out, it has helped others.

Hello sir i am from india facing LHON please suggest medicine for lHON

Does anyone with Mito or suspected Mito have an instant adverse reaction to Cannabis? Increases muscle pain fatigue and dysfunction.

Hello UMDF! This is great info. Not sure is my son (19/adult) is a rare case, but he is non-verbal and has been refused psychiatric care at University of Michigan. They might need to hear this talk.

Love you cuz-ty for sharing your story 🫂❤

My sis 🎉🎉🎉🎉

God is with you Patti! ❤

❤😊Love sharing my story. Hope it helps someone know, you are not alone.

Was your Diagnosis through genetic testing and muscle biopsy? My daughter has a mutation in T8993g they say NARP / Leigh syndrome.

Pls number to number contact i am from macedonia my boys have melas 6 years old

#mito

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??