According to the Center for Disease Control, mitochondria are tiny parts of almost every cell in your body and are like the powerhouse of the cells. They make the energy that cells need to grow and do work in the body turning sugar and oxygen into energy that the cells need to work. If the mitochondria is damaged or malfunctioning, the cells cannot carry out their functions leading to a mitochondrial disorder or disease. Some of the problems associated with the disease are developmental delays, mental retardation, seizures, dementia; weakness and/or pain in the nervous system; weakness, low tone, cramping and pain in the muscles; heart disease; twitching in the eyes and vision loss; kidney disease; and respiratory problems. More than 4,000 children born in the U.S. each year will develop mitochondrial disease by age 10, according to the United Mitochondrial Disease Foundation.
Mitochondrial disorder can be broken down into categories depending on what part of the body is affected and where the mitochondria are dysfunctional. Categories include mitochondrial cytopathy (of the cell), mitchochondrial myopathy (of the muscle), mitochondrial encephalopathy (of the brain) and mitchondrial encephalomyopathy (of the brain and muscle).
The disorder can lie dormant in your body, and not everyone with the disease will show symptoms.
“One day these people can be doing really well and then they get sick or stress in their life or get in a car accident or have surgery. They just go straight downhill. They may never get back to baseline,” said Julie Manley at Wednesday’s meeting of Sulphur’s Kiwanis Club.
“They don’t have cellular energy.”
Manley talks from personal experience. She knew something was wrong with her youngest child when he could not nurse. His body did not have the energy to expend on muscle movement. Jude was diagnosed with mitochondrial myopathy. He is fitted with a feeding tube but now only gets those feedings if needed. He is now able to eat by mouth, but Manley pointed out that there are still a lot of limitations for him, and things he will never do.
But with the right combination of medicine and a diet and exercise program, Jude is thriving.
“He can walk, he can talk, he can swim...there is hope,” said Manley.
Symptoms of the disorder usually appear in the toddler and preschool years, however adults can be affected.
“Adults are affected alike. They just don’t really realize it. They are diagnosed with maybe diabetes and hearing loss. Well, diabetes and hearing loss are the most common presentations in one of the mitochondrial diseases,” said Manley.
“In children and adults, we see organ failure. It could be hearing, vision, gastrointestinal, liver, or brain.”
According to Manley, 10 to 20 percent of all autism cases involve mitochondrial disorder.
“If the child has autistic tendencies and seizures and hypotonia and problems with reflux and eating, they need to be evaluated for mitochondrial disorder. Because three or more symptoms and failures of the body mean they have a bigger picture going on.”
More research is stilled need about any links between autism and mitochondrial disorder as well as in the field of vaccinations and the disorder.
“In the absence of research, we can’t tell the public what to do,” said Manley in regards to vaccinations.
Still, she personally believes that parents should vaccinate their children but consider spreading out multiple vaccinations over a period of a few weeks to lessen the chance of an overload to their child’s system.
Mitochondrial disorders have no cure and are generally thought to be hereditary. However, in Jude’s case, Manley stated that doctors are looking into environmental causes such as hormones in foods or pesticides.
Research into unmasking the causes of mitochondrial disorder, as believed by many scientists, may also lead to possible cures for other diseases.
“Whenever we talk about mitochondrial research, we find that it is extremely beneficial to Alzeheimer’s, Parkinson’s, heart disease, cancer, ALS, Huntington’s because as these powerhouses go bad, those organs become affected, and the disease processes itself involve mitochondria,” said Manley.
She also  pointed out that mitochondrial disorders are as common as cystic fibrosis but doesn’t get near the amount of funding or recognition.
“Mitochondrial disease is just not as well known.”
Locally, the United Mitochondrial Disease Foundation will be having the “Jude’s Fais Do-Do for Mito” fundraiser on Saturday, September 20, at the Jubilee Center on Maplewood Drive. The event chairpersons for the project are Mary Ann West and Linda Casiday. Respectively, they can be reached by phone at 337-563-9998 or at 337-625-5260. This fundraising effort is to raise research dollars for effective treatments and a possible cure.
Manley feels confident that the city of Sulphur will come out and help in this effort.
“I’m really glad to be from Sulphur. A lot of people have supported us,” said Manley.