Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Monday, October 18, 2010

Mitochondrial Disease

The Mitochondria act as the "powerhouse" of the cell that produce energy for the body to live. Mitochondrial disease is an energy metabolism disorder that affects babies, children, and adults of all ages, races, and gender. Experts agree that at least 1 in 4000 children and adults have mitochondrial disease; however, "Mito" may be under diagnosed  until improvements in diagnosis and awareness occur. They think that up to 1 in 200 people may have it, but are under-diagnosed with things like Fibromyalgia or Chronic Fatigue Syndrome which could be in fact a Mito disorder. Symptoms of "Mito" vary in frequency and severity and are different for everyone. Mito disease is often progressive, or fatal* and can lead to death. Today there is no cure for mitochondrial disease; treatment is focused on energy conservation and vitamin therapy.

What are the Symptoms of Mitochondrial Disease?

The severity of mitochondrial disease symptoms is different from person to person. The most common symptoms are:
  • Poor Growth
  • Loss of muscle coordination, muscle weakness
  • Neurological problems, seizures
  • Autism, autistic spectrum, autistic-like features
  • Visual and/or hearing problems
  • Developmental delays, learning disabilities
  • Heart, liver or kidney disease
  • Gastrointestinal disorders, severe constipation
  • Diabetes
  • Increased risk of infection
  • Thyroid and/or adrenal dysfunction
  • Autonomic dysfunction
  • Neuropsychological changes characterized by confusion, disorientation and memory loss.
  • Unexplained organ failure.
 *(there are worse things than death.)

    Need Support? You are not alone.

    Call us now at 1-888-MITO-411 (648-6411) to connect to a volunteer who can relate to the journey of diagnosis and the challenges of living with mitochondrial disease.  Volunteers are adults with Mito, parents of children with mitochondrial disorders, and caregivers.
    You can also email this month's volunteers by sending an email to mito411@mitoaction.org

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