Janet Williams was prescribed Epilim for seizures while she was pregnant. Now her two sons, Lee and Phillip, who are both in their twenties, have health issues related to the drug. This spurred Janet to begin a lifetime of raising awareness about this potentially dangerous drug and supporting families who have been affected.
Janet’s first son has painful scoliosis and her youngest son has more serious disabilities, which Janet says will never allow him to live independently. The primary ingredient in Epilim is valproic acid, which can have very serious consequences such as potential birth defects, eye problems, learning disabilities, and memory issues.
Many women like Janet are prescribed Epilim, even while pregnant. While it can make a positive impact on their own personal health, it may carry devastating consequences for their unborn children. Studies have found that 4 out of 10 babies, who were born after their mother took Epilim during pregnancy, are at risk for having developing disorders. This is steep when considering that only 1 out of 10 unborn babies are at risk for birth defects.
After her own experience, Janet helped begin a support group in 1999. She is also the co-founder of the Fetal Anti Convulsant Syndrome Association, whose purpose is to bring awareness and justice for families harmed by valproate.
The association actually found an old document from 1973 that said the committee on safety of medicines were reluctant release any information saying that Epilim was dangerous for unborn children because there was not enough evidence on it. They wrote that bringing this information to the public would cause “fruitless anxiety.”
While doctors were told of potential health risks of this medicine, no package inserts were included with the medicine. Janet fought against this decision for 3 years, declaring that women had a right to know about the risk of taking this medicine. Thousands of women are still prescribed this drug every year. Janet met with the Department of Health and Medicines, and Healthcare Products Regulatory Agency (MHRA) to have this practice changed.
Recently, the MHRA passed new legislation to ban drugs that contain valproic acid for women of childbearing age, unless they are on birth control. Janet Williams is thrilled with this new legislation. Although it has taken many years– 22 years of activism in her own life– she is pleased that changes are finally being made and children are being protected.
Despite this advance, Janet says the fight will never be over for her. About 20,000 people in the United Kingdom alone have been affected by the drug since the 1970’s when it started to become widely used. Now Janet is planning on working for providing a care plan and reparations for the families who have been harmed by the medicine and its consequences.
Read more about it in the Blackpool Gazette here.
