The International
League Against Epilepsy (ILAE) reported on Newswise 9-Mar-2022, the conflict has had serious
repercussions for people with epilepsy and the health professionals who support
them. About 250,000
of Ukraine’s
population of over 40,000,000 are reported to have epilepsy. Their supplies of anti-seizure
medications are running low. Seizure
frequency is likely to increase due to the trauma and destruction we see on nightly newscasts. We know why:
- Lack of anti-seizure medication and abrupt cessation of treatment.
- Potential for traumatic head injuries, premature births, and infectious disease outbreaks, which can all lead to seizures.
- Lowering of seizure threshold due to stress, sleep deprivation, and hunger.
Increase in seizure frequency
following major disaster is well documented:
- In 2011, in the eight weeks following the earthquake and subsequent tsunami in Japan, hospitalizations for seizures increased by over 50%.
- In 2017, a 20% rise in seizure presentations was reported in Florida after Hurricane Irma.
- The mortality rate from untreated, prolonged seizures is over 20%.
You know, in addition to anti-seizure medications, people
with diagnosed epilepsy require regular contact with health professionals and
treatment of associated conditions. Conditions such as depression, anxiety,
dementia, migraine, heart disease, and arthritis are up to eight times more
common in people with epilepsy than in the general population.
(ILAE) Actions
On March 7, ILAE held a meeting with leaders from chapters
in all countries affected by the situation in Ukraine. The group agreed on a
set of key actions (see below). ILAE is forming a task force to oversee
implementation of these actions, as well as to regularly advise on the
unfolding situation.
In addition to anti-seizure medications, people with
diagnosed epilepsy require regular contact with health professionals and
treatment of associated conditions. Conditions such as depression, anxiety,
dementia, migraine, heart disease, and arthritis are up to eight times more
common in people with epilepsy than in the general population. What do patients
confined to protective cellars due to rockets and bombing do?
Here’s what the ILAE endeavors to
accomplish for epilepsy in current Ukraine:
Work with all ILAE chapters to assess needs for medications;
Liaise with pharmaceutical companies to facilitate life-saving medications for
them; Develop guidelines for clinicians on different formularies and how to
safely change prescriptions; Translate epilepsy-related terms to help all
clinician-patient communications; Fundraise to provide mobile phones and SIM
cards to allow connecting with services, psychological support and medical
record keeping; Develop clinical networks to assist front-line clinicians to
access expert advice on epilepsy; advocate all governments for free
prescriptions for all people with epilepsy and promote including anti-seizure medications
in all emergency medical supplies.
IBE/ILAE Joint Statement
ILAE and its sister organization, the International Bureau
for Epilepsy (IBE), released a statement regarding the situation in Ukraine:
IBE and ILAE work with, and on behalf of, all people with
epilepsy – wherever they live in the world – to promote care and treatment, to
improve understanding and inclusion, and to address discrimination in all its
forms.
ILAE and IBE are concerned about the impact of the current
situation in Ukraine on the availability of treatment and access to care for
people with epilepsy in the region.
We also know that an increase in seizures and epilepsy is
likely because of conflict related injuries, infectious disease outbreaks and a
rise in premature and complex births.
Additionally, we are concerned about the rights of people
with epilepsy who often face increased discrimination, exclusion, and stigma
during times of crises.
ILAE and IBE call on authorities and humanitarian responders
to ensure uninterrupted supplies of critical and life-saving anti-seizure
medicines.
ILAE and IBE urge all to respect the neutrality and sanctity
of medical personnel and health facilities during this conflict.
For more information on these initiatives, contact:
Founded in 1909, the International League Against Epilepsy
(ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education, and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
Lance Fogan, M.D., is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.
