So what's wrong with you exactly?
Good question. I'd like an answer to this myself. At the time of writing (November 2010), I've been diagnosed with the following disorders: (in alphabetical order)
- Autonomic nervous system failure (dysautonomia)
- Chronic intestinal pseudo-obstruction due to visceral neuropathy
- Chronic fatigue and muscle pain of unknown etiology
- Chronic kidney stone disease of unknown etiology
- Gastro-esophogeal reflux disease (GERD)
- Gastroparesis
- PMDD
What problems does your disease cause you in your daily life? What are your symptoms?
It varies. On a good day, if my medications are doing their job, I feel almost normal, apart from a bit of fatigue. Days like these I can almost forget that I have a chronic illness, apart from all the medication I take. More often than not, however, I don't have this luxury. I deal with severe fatigue which can be difficult to overcome. I also have chronic muscle pain. Autonomic nervous system dysfunction can cause heat intolerance, racing heartbeat, and unexplainable fevers. My stomach is partially paralyzed (gastroparesis) due to nerve death, which results in chronic nausea and sometimes vomiting. The best way I can describe it is like having a never-ending stomach flu. The neuropathy also affects my intestine, resulting in CIP, an inability to properly move food through my intestines. This gives me obstructive-like episodes of severe abdominal pain, diarrhea, constipation, and malabsorption, as well as frequent overgrowths of bacteria in my small intestine, which can cause problems of their own, and the occasional physical obstruction. I've had to change my diet to ameliorate these problems, but it does not completely counteract them. I also sometimes get kidney stones (I've had 17 in the past 8 years), which are also extremely painful.
Do you take any medications? How do you manage your symptoms?
As of this writing (November 2010), I take the following medications/supplements daily:
- Multivitamin (to help my immune system and combat malabsorption)
- Coenzyme Q-10 (to help boost mitochondrial function)
- Levocarnitine (ditto)
- Urocit-K (to prevent me from getting even more kidney stones)
- Calcium and Vitamin D (because I'm female and would prefer not to get osteoporosis)
- Extra Vitamin D (I seem to be prone to deficiency)
- B complex Vitamins (for energy, theoretically)
- Nuvigil (a wakefulness promoting agent to combat fatigue)
- Dexilant (for GERD)
- Probiotics (to try to maintain my intestinal flora)
- Octreotide (a sub-cutaneous injection I perform every night to keep my intestine moving)
I also take a course of antibiotics once a month to clear out any overgrowth of bacteria in my small intestine. Depending on how I'm feeling, I may also take Zofran (for nausea), Dilaudid (for abdominal pain), or Flexeril (for muscle pain.) I also had a neurostimulator (Enterra) implanted in my stomach in May of 2009. Using the same technology as a cardiac pacemaker, it sends electrical impulses to the nerves in my stomach, which helps alleviate some of my symptoms. It's barely perceptible when looking at my stomach, but you can feel it through my skin. It can be adjusted with a remote control that my doctor has, and makes me wary around magnets.
Whoa, you're a cyborg? That's badass.
Yeah, I'm not gonna lie. It's pretty awesome.
Where does the name Mitochondrial Eve come from?
Mitochondrial Eve is the matrilineal ancestor from whom all living humans once descended. Mitochondria are organelles (parts of cells) that function in the generation of ATP, or chemical energy. Mitochondria are only inherited maternally, hence the mitochondria present in humanity today can be traced back to a female ancestor.
I've always been fascinated by mitochondria; they've been my favorite organelle since I first learned about the different components of the cell. They have an extremely important function and their own DNA. Their origin (see the endosymbiotic theory) is pretty amazing too. It's therefore somewhat ironic that my mitochondria are the cause of so much woe.
I've always been fascinated by mitochondria; they've been my favorite organelle since I first learned about the different components of the cell. They have an extremely important function and their own DNA. Their origin (see the endosymbiotic theory) is pretty amazing too. It's therefore somewhat ironic that my mitochondria are the cause of so much woe.
I chose the name "Mitochondrial Eve" not only because I'm a girl with mitochondrial disease, but because I'm a biologist. I love to think about my mitochondria, passed down from my mother, her mother, and so on, back to the first human ancestor. It's a name that conveys a sense of female empowerment, along with history, and that harkens back to the origins of eukaryotic life.
Plus, I just think it sounds cool.
