By Katie Johnston
Epilepsy, a chronic disorder of the nervous system characterized by recurrent, unpredictable seizures, is the most common neurological disorder in women of reproductive age. Over one million women and girls in the United States require specialized care for their sexual and reproductive health, due to potential interactions between antiepileptic drugs and hormonal contraception that, among other things, can reduce contraceptive efficacy and increase the risk of seizures, which increases the risks of morbidity and mortality.
However, newly published research conducted by Ibis Reproductive Health shows that teens with epilepsy are largely unaware of these interactions or the consequences of them: they report not having access to this information and rarely receiving information from health care providers about the effects of antiepileptic drugs and contraception interactions. It is not surprising that compared to the general population, women and girls with epilepsy have a lower rate of highly effective contraceptive use.
Ibis is working to change that. In 2012, Ibis created a contraception decision guide to help women with epilepsy ask the right questions of their doctors. Now, Ibis has turned to providing this information in digital form to teens. The research organization is behind GirlswithNerve.com, a website for female teens with epilepsy that provides information about sexual and reproductive health.
Launched on March 26, also known as Epilepsy Awareness Day or Purple Day, GirlswithNerve is made by teens, for teens. Ibis spoke to teens ages 13-19 across the country to determine what information they need about their sexual and reproductive health and translated their voices directly into the design of the site, which has a streamlined, colorful layout.
GirlswithNerve provides information about periods, dating and sex, contraception, and pregnancy and parenting, and it lists links to information resources like the Epilepsy Foundation, Bedsider, and Scarleteen. Along with an interactive page listing the pros and cons for each method of contraception, including possible interactions with antiepileptic drugs, GirlswithNerve lists questions that teens can ask their doctors so they can broach these topics, which can sometimes be difficult or embarrassing.
Aptly named, GirlswithNerve reflects the bravery of the teens who shared their experiences about epilepsy, which is so often surrounded by stigma and shame. Study participants discussed the contraception they use, their interactions with physicians, their experiences with dating and sex while having epilepsy, and their feelings and thoughts about pregnancy and parenting.
Many direct quotes from the original study participants, labeled with pseudonyms, can be found throughout the site. Inspired by the courage these girls demonstrated, GirlswithNerve seeks to create a space for other teens to safely do the same; teens will soon be able to post their stories on the GirlswithNerve blog. They can also connect with GirlswithNerve on Facebook and Twitter.
By showing these stories to other sexual and reproductive health advocates and physicians, GirlswithNerve highlights the challenges that women and girls with epilepsy face and how important it is to bring them into mainstream conversations about comprehensive sexual and reproductive healthcare. It is critical that women and girls with epilepsy receive the information they need.
Ibis Reproductive Health has taken steps to bridge this gap, both online and in the literature. Hopefully, more advocates can take the momentum Ibis created and truly show the world how much “nerve” these girls have.
Katie Johnston, a recent MPH graduate from Boston University School of Public Health, was an intern with Ibis Reproductive Health this year. She is interested in sexual and reproductive health, economic justice and gender equity.