Living with Mitochondrial Disease

[dixontard1]

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

[tangerinetigerr]

with Christ's help i have battled the terrible effects of diabetes

for 20 years, both with poor eyesight, as well as hand mobility,

and now dupuytrens contracture in both hands, along with a

history of epilepsy. i have injected myself more than 36,000

times with insulin; i can handle it but i cringe when children

like the ones in this video have to have that done =[ God

bless you all, especially that little darling who wants to be a

doctor when she grows up. S-80711 123AM

[oknej12]

Maybee the solution is sodium DCA which can be bought at really cheap price at pharma-dca. I picked that story when I searched for cure for cancer.

I know they add sodium DCA to cures for mitochondrial disease but these medications are expensive and with lower quality. Please check it - it may help or maybee not, I don't know.... Just check and keep up good faith! Every disease you must win in you head first - this is more than half of succsses!

[pantyflash]

Like, even though your mitochondria are hosed, you're very cute. You go, girl!

[KatherineDeGuia]

im 15 and i was diagnosed when i was 1. im doing my biology project on it right now actually. this video helped so much!

[weenz05]

@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

[gfcfmomofmany]

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.

[ghostgate82]

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.

[saleenonly]

I hav mito. I was diagnosed after about a dozen muscle, skin, and nerve biopsy's. I'm only 17 and I hav had since I was 3. I hav learned to deal with the pain, but it sucks taking so much medication.

[somethinggoeshere1]

=( Why is the word not spread about this disease? This is worse than cancer and there is the same amount of people with cancer in this. Don't get me wrong, cancer is horrible, but this is so unknown to the world...

[dmberry1001]

I am so sorry for you. My daughter had a severe Mito disease called Melas syndrome. She manifested at age 10 and battled it until age 18. She lost the battle one year ago. She had a feeding tube and infusa-port also. Don't give up, she never did and survided much longer than was predicted. May God bless you and keeep you strong! Hope for a cure.

[crystaljo74]

@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 ~

[birds16ful]

That was very hard for u living with Mitchondrial Diease

[louannc]

This message is to Heidi Simoes... I wanted to encourage you and Alexandria. I am an adult with a mito disease. I was diagnosed with MERRF when I was 25. I am graduating from medical school next month and will start a neurology residency in July. I ride around the hospitals with a scooter and use a fold out seat. She can be a doctor if she perseveres; I am proof of that!

[morgenswifeholly]

@louannc hello i am looking for other adults with mito my email is morgenswifeholly@yahoo

[gizmo357]

@morgenswifeholly I am reccently diagnosed

[gizmo357]

@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

[LoriMichelle924]

I have Mitochondrial Disease.

It's a continuous struggle, everyday gets harder.

Stay strong.

Life is about quality, not quanity.

[jlroesener]

my cousini is the first person to be born and diagnosed with mitochandrial disease. all of her three sisters have this too. this is rare but not made up. Who would make up something like that? But it isn't as ad as the feeding tubes, ect......yet.

[DarkRain9000]

this is probably not a new disorder. all signs point to medicine not realizing mitochondria can malfunction. Doctors typically don't suspect mitochondria right away as the reason why somebody is feeling a certain way until now. Now that Doctors are studying mitochondria there will probably devise a treatment for this disease

[1992peter]

This is absolutely heartbreaking!

God bless!

[kittykoosie]

Is this a relatively new disorder? Is it from toxicity?  I am researching Autism spectrum is there any wholistic treatment for this? Special Diet? Acupunture? Western medicine is so very toxic. It seems like the people who have this disease would be made sicker by the western approach which is to pump toxic drugs into their already sickened bodies.

[wbbrown36]

It's caused by a DNA mutation that is present at birth. My kids inherited it from me. It is prevalent in the autism community-my symptomatic son has autism. Interestingly, the treatments for mito ("western approach/MD") are all supplement and diet/lifestyle based. Things like co-q-10 and carnitine for example, reducing fat intake, avoiding fasting, etc.

[lauren8606]

@kittykoosie ..i dont have much to say about the drug treatment because i am not knowledgeable enough, but my father died of mitochondrial myopathy (sorry if i spelled that wrong). he had all kinds of problems associated with the disease but his muscles would swell to the point where his skin...mostly on his legs..... would burst open..the more drugs they gave him the sicker it seemed he had always gotten.....feel free to reply back, im not on that often tho so it may take me a while to respond!

[prajnajewelry]

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....