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Dr. Bex

๐Ÿ‘ค Speaker
1494 total appearances

Appearances Over Time

Podcast Appearances

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

So mitochondrial disease takes on many forms. And I think any pediatrician or metabolic specialist can tell you that there are severe forms of mitochondrial disease that are devastating. These are the ones we know the most about. There are names, MELAS, they're all kind of acronyms, but M-E-L-A-S is one syndrome. and others that are much more well studied and much more understood.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

So mitochondrial disease takes on many forms. And I think any pediatrician or metabolic specialist can tell you that there are severe forms of mitochondrial disease that are devastating. These are the ones we know the most about. There are names, MELAS, they're all kind of acronyms, but M-E-L-A-S is one syndrome. and others that are much more well studied and much more understood.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

And those patients are usually very devastated by their symptoms. I have had some mitochondrial patients who have passed away in the first year of life. One was actually the patient that got me into pediatrics after doing a year of psych training. It was actually the patient that inspired me to go back and actually just do pediatrics was a patient with severe mitochondrial disease.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

And those patients are usually very devastated by their symptoms. I have had some mitochondrial patients who have passed away in the first year of life. One was actually the patient that got me into pediatrics after doing a year of psych training. It was actually the patient that inspired me to go back and actually just do pediatrics was a patient with severe mitochondrial disease.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

And those patients are usually very devastated by their symptoms. I have had some mitochondrial patients who have passed away in the first year of life. One was actually the patient that got me into pediatrics after doing a year of psych training. It was actually the patient that inspired me to go back and actually just do pediatrics was a patient with severe mitochondrial disease.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

and he passed away before he was a year old. So there is true mitochondrial disease. And I think if you look at some of the people even involved in MitoAction, some of them are researchers or do their work with these specific conditions. And I don't want to, I guess, poo-poo those anything about true mitochondrial disease because those children are devastated.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

and he passed away before he was a year old. So there is true mitochondrial disease. And I think if you look at some of the people even involved in MitoAction, some of them are researchers or do their work with these specific conditions. And I don't want to, I guess, poo-poo those anything about true mitochondrial disease because those children are devastated.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

and he passed away before he was a year old. So there is true mitochondrial disease. And I think if you look at some of the people even involved in MitoAction, some of them are researchers or do their work with these specific conditions. And I don't want to, I guess, poo-poo those anything about true mitochondrial disease because those children are devastated.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

And then there's this whole other world of mitochondrial disease that has become much more, I don't know if it's popular, much more known maybe, or people are talking about it a little bit more. And this is the concept that if you have even the slightest thing going on within your mitochondria, that of course you wouldn't have energy. Of course you would maybe have muscle weakness.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

And then there's this whole other world of mitochondrial disease that has become much more, I don't know if it's popular, much more known maybe, or people are talking about it a little bit more. And this is the concept that if you have even the slightest thing going on within your mitochondria, that of course you wouldn't have energy. Of course you would maybe have muscle weakness.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

And then there's this whole other world of mitochondrial disease that has become much more, I don't know if it's popular, much more known maybe, or people are talking about it a little bit more. And this is the concept that if you have even the slightest thing going on within your mitochondria, that of course you wouldn't have energy. Of course you would maybe have muscle weakness.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

Of course you wouldn't be able to get out of bed some days and things like that. And that some of the symptoms that are starting to be associated with mitochondria are maybe chronic fatigue or other things that have come up over the years that maybe we haven't been able to explain, there's now studies into whether it involves the mitochondria.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

Of course you wouldn't be able to get out of bed some days and things like that. And that some of the symptoms that are starting to be associated with mitochondria are maybe chronic fatigue or other things that have come up over the years that maybe we haven't been able to explain, there's now studies into whether it involves the mitochondria.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

Of course you wouldn't be able to get out of bed some days and things like that. And that some of the symptoms that are starting to be associated with mitochondria are maybe chronic fatigue or other things that have come up over the years that maybe we haven't been able to explain, there's now studies into whether it involves the mitochondria.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

So where I am as a pediatric hospitalist is I've had patients with those very severe mitochondrial diseases. So I actually find myself a little bit frustrated with some of kind of all of this being lumped together because I feel it is two very different entities. And now mito, quote unquote, has become kind of this catchphrase. And

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

So where I am as a pediatric hospitalist is I've had patients with those very severe mitochondrial diseases. So I actually find myself a little bit frustrated with some of kind of all of this being lumped together because I feel it is two very different entities. And now mito, quote unquote, has become kind of this catchphrase. And

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

So where I am as a pediatric hospitalist is I've had patients with those very severe mitochondrial diseases. So I actually find myself a little bit frustrated with some of kind of all of this being lumped together because I feel it is two very different entities. And now mito, quote unquote, has become kind of this catchphrase. And

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

It's difficult because the testing, some of what Andrea was talking about in the Justina case, would be extremely positive and there would be no question in those kids that have those true genetic syndromes. And now there's this whole world of kind of sequencing all your mitochondria and looking into everything.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

It's difficult because the testing, some of what Andrea was talking about in the Justina case, would be extremely positive and there would be no question in those kids that have those true genetic syndromes. And now there's this whole world of kind of sequencing all your mitochondria and looking into everything.

Nobody Should Believe Me
Exploring the Disturbing World of Mitoaction.org

It's difficult because the testing, some of what Andrea was talking about in the Justina case, would be extremely positive and there would be no question in those kids that have those true genetic syndromes. And now there's this whole world of kind of sequencing all your mitochondria and looking into everything.