“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 effect 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 (NIH) funding shows that 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. If asked, 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 area.
This post originally appears on the Healthyist on October 22, 2015.