This year marks the 20th anniversary of the movie Philadelphia, which was a turning point in the AIDS movement. In 1993, people were dying as a result of HIV and AIDS related causes in great numbers. Those infected were living with such severe stigma that people were afraid to tell loved ones, afraid to get treatment, there was even fear of being associated with someone who was diagnosed with HIV or AIDS. The movie changed the conversation that was happening here in the US. However, it never would have happened without a band of activists who made enough noise to be heard.
Now 20 years later a new movement is beginning.
People with epilepsy are living with a frighteningly similar stigma. They are dying as a result of seizure and epilepsy related causes in great number. Often people living with epilepsy are afraid, with good cause, to tell employers tell loved ones, and to seek treatment for fear they will be ostracized from their community. Does all this sound familiar? It should.
Epilepsy and AIDS
Let’s take a look at the prevalence and mortality statistics of epilepsy and AIDS.
The disease is scarier than death itself. The disease is so messy, so devastating, so pervasive. It robs you of everything you hold dear.
– Larry Kramer on AIDS
This quote is interesting as it applies to both epilepsy and AIDS.
A little history
Although epilepsy has been around for centuries, people have only recently begun to talk about it. In the not too distant past people with epilepsy were:
- Euthanized in Nazi Germany and US in early 20th century
- Sterilized in the US through the mid 20th century
- Not allowed to marry according to laws in states throughout the US until 1980
Again, sound familiar? Similar human rights infringements impacted the AIDS community.
Plague: A widespread affliction or calamity, especially one seen as divine retribution.
There clearly have been parallels between the epilepsy and AIDS and epilepsy communities for a long time. Ironically, we just heard news that a drug which was developed to treat epilepsy has the potential to block the AIDS virus. In fact, Dr. Warner Greene, of Gladstone Institutes will begin a Phase II study on the drug next year.
So now it’s time that the epilepsy community learns a few lessons from the AIDS community. We need to band together. We need to support one another. This is not a one man war. Nothing will change if we each stay quiet in our little corner of the world. It’s time to make some noise.
Founder and CEO
Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.
by the figures its showing that epilepsy is much worse than AIDS.AIDS have a worse death than us.is this good for awareness for epilepsy ??? I had epilepsy since baby.My sister made this point and I totally agree with her
Jessica Keenan Smith
Thank you so much for reading and commenting on the post. I am not willing to say epilepsy is “worse” than HIV/AIDS simply because the stats are what they are. I worked for an AIDS organization during the height of the crisis so I have sense of the devastation the disease creates.
That said, unless people have some way to put statistics in context the numbers don’t mean anything. Additionally, I have long felt there are many comparisons between the AIDS and Epilepsy communities. So I felt it was worth a conversation.
Thank you again for the comment.