| Why does this
site use so many big words? |
Sorry. This is
a complex disease, and unfortunately sometimes it is necessary to use
scientific (or large) words so that we may accurately describe something
to those that are in (or conversing with people in) the medical
profession. We will try to simply define all the hard ones in our glossary,
but sometimes even that can be pretty hard for the average person to
follow. Cellular biology is by no means an easy topic! |
| What is a
mitochondria? |
Mitochondria (plural of mitochondrion) are tiny structures in most body cells that
convert food into energy. |
| What is a Mitochondrial
disease? |
A defect or mutation in mitochondria that cause less
energy to be produced. As the disease progresses, whole systems or
organs may fail, often resulting in death. |
| How do you
know if it's a Mitochondrial disease? |
Diagnosis is currently very hard to do accurately, and can
only be done by specialists and highly sophisticated laboratories.
Symptoms include cardiac problems, chronically lowered immune systems,
vision/hearing problems, muscle weakness, lack of motor control,
digestion problems, eating disorders or inability to eat, developmental
delay and retardation, seizures or other neurological problems. |
| What do I do
to treat it? |
Most of the time, TLC is the most vital treatment. Proper
care can only be prescribed by a qualified specialist. Often times, a
mito patient will be started on a mito cocktail - which consists of
vitamins and nutritional supplements. |
| What is the
cure? |
Sorry - at this point in time it is incurable. |
| How do people
get Mitochondrial Diseases? |
Current evidence supports the fact that it is inherited.
The inheritance is complicated and beyond the scope of this document. It
will be covered elsewhere on the website. |
| Do people die
from it? |
Yes, it is progressive and degenerative - ultimately
leading to death in a large percentage of cases. |
| How far off is
a cure? |
We don't know. Research into the disease is just starting,
and it is a highly specialized and small field. |
| How common is
this disease? |
Current statistics show that 1 in 4,000 babies are born
with this disease to some extent. Many go undiagnosed and lead
"normal" lives - many aren't so lucky. As doctors learn to
diagnose it better, these numbers may change. |
| I suspect I
have (or know someone who has) a Mitochondrial disease - how can I be
sure? |
Biopsies are currently the most commonly used tool for
accurate diagnosis. These can be skin, muscle or liver. Each has
different pros and cons. If you suspect you really have mito - please
contact someone from our contacts list and
discuss these options personally so that we can properly inform you of
why you would use one over another, and tell you about the proper
procedures for doing each one (unlike standard lab tests mito tests are
fairly peculiar and your doctor/lab will need to be familiarized with
how to conduct them properly so you don't waste time and money!) |
| How long do
people with mito live? |
Anywhere from days to decades!
Although the disease is considered progressive, it sometimes progresses
very slowly (or doesn't even become symptomatic until adulthood) - other
times it progresses rapidly and death happens even quicker than a proper
diagnosis can be made. |
