Tuesday, September 20, 2011

A few Mito Facts

I have gathered some important and interesting Mito facts from fellow Mito Moms, UMDF, and other various places. Please take a minute to read them, and see the fight that our kids, friends, and loved ones face.

~ There is no cure! Please continue to share this page and others to raise awareness for Mitochondrial Disease.

~ Mitochondrial disease is almost as common as childhood cancer, yet in the case of mito, there isn't a treatment protocol, no cure rate, only a handful of specialists and very little awareness!

~ Mitochondrial Disease is a debilitating and often fatal genetic disorder that robs the body's cells of energy causing organ systems to become damaged and fail. Think of a city, when it loses power completely it's called a "black-out" (and if it only has partial power it's called a "brown-out"), and during a black-out the city can no longer function properly, and sometimes shuts down completely. When a person has Mitochondrial Disease their body is like a city that is on a permanent "brown-out", with periodic "black-outs" (such as when there is organ failure or a mito crisis).

~ There is no treatment and no cure for this disease, and even in the medical community there is very little awareness of its existence (which often causes misdiagnosis and either delayed, inadequate, or non-existent treatment of the symptoms). We need more research and more doctors who both understand this complex disease and are willing to treat those affected. 

~ Every 30 minutes a child is born with a mitochondrial disease. Each year, there is an increase in the number of adults who are being diagnosed with mitochondrial disease.

~ Research tells us that between 1,000 and 4,000 children are born with a mitochondrial disease each year.

~ Research also indicates that 1 in every 200 healthy people may carry the mutation that could develop into a mitochondrial disease in their lifetime.

~  Mitochondrial Disease can masquerade as autism, bi-polar, celiac disease, Reflux (GERD), seizure disorders, scoliosis, auto-immune disease, chronic fatigue syndrome, anorexia (and other eating disorders), endocrine diseases such as diabetes, autonomic dysfunction…the list goes on...YET few are even tested for it?

~ Mitochondrial Disease Facts - Via www.mitoaction.org, "How is Mitochondrial Disease Diagnosed?
   ~ There is no reliable and consistent means of diagnosis.
   ~ Diagnosis can be made by one of the few physicians that specializes in mitochondrial disease.
   ~ Diagnosis can be made by blood DNA testing and/or muscle biopsy but neither of these tests are completely reliable."
   ~ Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy.
   ~ As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death
      will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended. (utmito.org)

Please Help us Raise Awareness for Mitochondrial Disorders, not only during this week for Awareness week but year round.

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