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Woman fights to find cure for rare disease
Marathon runner competes to raise awareness for mitochondrial disease
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Sandy Riggin stretches after running Monday morning near her practice in Oakwood. Riggin will run in the Silver Comet race on Oct. 30. The race raises money for the United Mitochondrial Disease Foundation. Riggin has this disease. - photo by SARA GUEVARA

Mitochondrial disease

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 percent 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

 

Source: www.umdf.org.

 

More information about mitochondrial disease

Donate to Riggin’s Cause

Silver Comet Races

How much energy does it take to power a home? Imagine being left with only 25 percent of that energy. Things wouldn't run as smoothly, would they?

Now imagine that instead of your home, it's your body that had to run on 75 percent less energy than it needs.

This is a glimpse of what it's like to live with mitochondrial disease, something most of us know nothing about and what Sandy Riggin lives with every day.

"Mitochondrial disease is waking up every single day of my life being so tired, so fatigued that I can hardly breathe. It's my muscles getting progressively weaker. They hurt all the time," said Sandy Riggin, a licensed professional counselor who was diagnosed with mitochondrial disease three years ago.

Those with mitochondrial disease have to worry about things most leave unnoticed.

"I have to be very careful about energy management. I might be good for an hour or two, but then I have to lie down and sleep. This disease is basically stealing my life away one system at a time," Riggin said.

Because mitochondrial disease attacks the part of cells that produces more than 90 percent of our body's energy, it complicates everything, from the most basic to the most complex functions.

"It affects my thinking, my ability to eat. I suffer from microaspiration. I have a hard time swallowing. Basically, it is the most depressing thing to go through," said Riggin.

While the disease is becoming more prevalent, it is still widely unknown. It took 43 years of probing and prodding before Riggin achieved a diagnosis.

"People do not understand this disease. They want to say it's in your head or you're faking it," Riggin said, "but what they don't understand is that we can exert ourselves one day, but we'll suffer for it the next."

Being a marathon runner, Riggin experiences this misunderstanding firsthand.

"No one comprehends how I can run, but what they don't see is after I do, I cannot function for a week," she said. "It makes me feel very isolated and alone. I cannot go to movies unless someone comes to pick me up. It's hard cleaning my house — just the thought of getting the vacuum cleaner out is overwhelming."

In order to raise awareness about mitochondrial disease, Riggin has teamed up with the United Mitochondrial Disease Foundation. She will be running a half marathon in a fundraising effort aiding research for a cure.

"I am running because I have a mitochondrial disease that kids are dying from at a relatively young age. If you make it into adulthood and you survive, it's a pretty hard thing to deal with. The symptoms get worse over time. There hasn't been enough funds set aside for research, so there's no cure. If I can help raise money with this race, maybe I can help find a cure for this thing," Riggin said.

By definition, Riggin should not be able to run this race. However, she compels herself to go beyond others' expectations.

"They tell me I cannot run, but I do it because I push myself. It gives me something to hold onto. It makes me feel like I'm part of a normal population. I'm not the sick person. Running gives me a taste of normalcy," she said.

Through her fundraising efforts, Riggin has set an example for others suffering from mitochondrial disease.

"Sandy is a piece of motivation," said Chuck Mohan, the CEO and executive director of UMDF. "Here she is about to run a half marathon and many days, she has a hard time getting out of bed."

Mohan and Riggin met at one of UMDF's symposiums, an annual event designed to bring doctors, researchers and patients together in attempt to exchange information about mitochondria and the diseases resulting from mutations of it.

"It was a pleasure to meet her. She is certainly an example. We use her to show folks how they can become part of the cure — she refuses to let the disease control her," Mohan said.

Mohan and his wife, Adrienne, lost their 15-year-old daughter, Gina, to mitochondrial disease in 1995. There is still no sign of a cure. With Riggin's help, Mohan hopes to encourage others to join in the fight against mitochondrial disease.

"Sandy is very committed to do this race. It helps raise awareness. It shows others they need to move forward whether they have a chronic illness or not," he said.

Statistics show that 1 in 4,000 children born will be diagnosed with mitochondrial disease by age 10. One in every 200 healthy people harbors a mitochondrial mutation.

"You may not have this disease, but your child could still get it," Mohan said. "Sandy's fortitude is inspiring. She is a great person."

Riggin will be running in the 10th annual Silver Comet Half Marathon on Oct. 30. Silver Comet Races is part of the Get Fit Atlanta network.

"Sandy Riggin is a testament that anyone can run. You're stronger than you give yourself credit for. There aren't many things you can't do if you put your mind to it," said Dana Greene, founder of Get Fit Atlanta and director of Silver Comet Races.

Greene founded Get Fit Atlanta as a support group for herself and others who wanted to stay in shape without the hassles of self-fundraising.

"Pain is human. We are all going to have pain of one sort or other. I'd rather have the pain of being in shape than the pain of being overweight: diabetes, embarrassment, high blood pressure and so much more," Greene said. "Riggin shows that a little bit of pain is worth it in the long run. If she can do it, anyone can."

"If you have mitochondrial disease, hang in there and don't quit. Stay as active as you can ... Just don't give up. Get involved with organizations like UMDF. One day a cure will be found; you just have to be patient until then," Riggin said.

Mitochondrial disease does not have to define the person it consumes. Riggin is a testament that life can go on, even when it's being taken from you one system at a time.

 

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