"Do you think they don't do as much research into finding a cure
for LGS because it doesn't affect that many people?" My mom asked
me this question a few weeks ago, almost in passing, regarding my
great-nephew (her great grandson) who has Lennox-Gastaut syndrome
(LGS). Obviously, given what I do for a living (managing editor at
a health communications company that specializes in recruitment of
patients for clinical trials), I know a little something about this
subject. The answer isn't an easy one.
In reality, there is probably a lot of truth behind her
question. LSG is extremely rare. It effects somewhere between 1 and
4 percent of cases of pediatric epilepsy. Although epilepsy is
fairly well known, few people have ever heard of LSG. Fewer people
still have been affected by this debilitating form of epilepsy for
which there is no cure. Five years ago, I was one of those people
who knew nothing of this horrible disease. Until a sweet, adorable,
little boy full of love and energy came waltzing into our family
and forever changed my perspective on epilepsy, as well as my views
on medical research funding.
It's an unfortunate fact that orphan diseases or
disorders--those that affect fewer than 200,000 people--often do
not receive the same level of funding for research as other
conditions. But uneven investigative funding isn't limited to rare
diseases. An analysis of National Institutes of Health funding
the diseases that cause the most harm do not necessarily receive
the most funding. For example, chronic obstructive pulmonary disease is the
third leading cause of death in the United States, yet it ranks
near the bottom of the
list for NIH funding.
We've done a superbly good job in this country of raising
awareness of some diseases, with breast cancer coming to mind of
course during October, which is the month dedicated to breast
cancer awareness. We've done such a good job of raising awareness
of breast cancer, in fact, that the American Heart Association
(AHA) has to work doubly hard to convince women that they are
actually more likely to die from heart disease than breast cancer.
more women still believe that breast cancer poses a higher risk of
death than heart disease. However, according to the AHA
heart disease is more deadly than all forms of cancer combined and
is responsible for 1 in 3 deaths among women each year.
It's not the fault of those who have worked so hard to raise
awareness of breast cancer that other diseases don't receive the
same share of the limelight. But as health communicators, we can
throw around our collective weight and drum up some attention for
some of the lesser-known conditions.
With that said, November 1 is International
LSG Awareness Day. If you would like to play a role in raising
awareness of LGS during this worldwide event, email firstname.lastname@example.org for more
information on how you can organize an awareness event in your