Mitochondrial Disease Awareness Week

(Here is the letter to the editor I submitted to our local paper last year)


Help find cure for mitochondrial disease

Years ago I realized I could deal with the struggles of having a child with a disability.
Until recently I didn't realize how difficult it would be to possibly lose that child to a progressive disease.

My daughter has a mitochondrial disease. Although she had delays, she was doing well and making progress. Within weeks her health went downhill fast. She started having seizures and GI issues that continued to get worse each week.

She spent Christmas in the hospital having seizures and vomiting frequently. The next day she was placed in an induced coma to try to stop the seizures. With our family by her side, we waited until New Year's Day to see our daughter open her eyes. A year before, we never would have imagined we would be anywhere near a hospital.

According to United Mitochondrial Disease Foundation, every 30 minutes, a child is born who will develop a mitochondrial disease. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease.

Exact numbers of children and adults suffering are hard to determine because so many people who suffer from mitochondrial disease are misdiagnosed. We now know the disease is approaching the frequency of childhood cancers.

Lack of awareness is why my family and I never realized the severity of this disease. We never realized that one week our daughter would be healthy and the next she would be fighting for her life.

Sept. 21 through 27 is Mitochondrial Disease Awareness Week. As UMDF raises money for research some children lead healthy lives while others are severely affected and fighting for their lives.

Please help all those fighting, like my daughter, by helping raise awareness. Awareness can raise much-needed money for researchers to find treatments and hopefully a cure for mitochondrial disease.

Colleen B.



About Mitochondrial Disease(info from UMDF)


Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.



Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.



Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.


WHY IS RESEARCH SO CRITICAL?


There are no known treatments or cures for mitochondrial disease.


Mitochondria may play a far greater role in human health than scientists and doctors have realized. Any health concern that is an energy problem could be related to the mitochondria.



Further research into the mitochondrion and primary mitochondrial diseases (those due to genetic defect) would benefit millions of people. It would offer hope to the thousands suffering from this debilitating and often fatal disease and provide a broad range of new therapeutic approaches for attempting to treat these other very common and incapacitating illnesses and conditions.



MITOCHONDRIAL DEFECTS ARE A CENTRAL FACTOR IN HUMAN HEALTH AND DISEASE.



Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:



• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.

• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.

• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.