UCB spoke with caregiver, Debbie, about her experience caring for her daughter living with epilepsy and its personal impact on her, as well as the important role of telehealth in epilepsy care. Her story speaks to the challenges many caregivers face when looking after their loved ones and the importance of prioritizing their own mental health. As one of UCB’s Epilepsy Advocates and as a patient advocate for the Epilepsy Foundation, Debbie supports others living with epilepsy and their families throughout their healthcare journey. In these roles, she helps many find access to the right mental health resources, which she says can be a “game changer” for both epilepsy patients and their loved ones.

Beginning of Q&A

Question: Can you share your experience with epilepsy through your daughter’s diagnosis with the condition?

Debbie: Yes, my daughter, Noel, was 8-years-old when she was diagnosed with epilepsy. I was devastated when we first got her diagnosis. I went through a period of grief. It was tough to see Noel in pain, and I was worried about what her diagnosis meant for her future. Over time, I came to a place of acceptance with Noel’s diagnosis. Instead of worrying, I became very focused on giving her the best quality of life possible and that has been my focus ever since.

Like other epilepsy patients, Noel’s epilepsy diagnosis has taken a toll on her cognition and motor skills, making it hard for her to walk and travel. Today, she experiences seizures daily. Noel’s epilepsy is refractory -- meaning that her seizures are drug resistant. Despite Noel’s life-defining diagnosis, she has found many activities that have helped energize her. Noel loves swimming in the pool in our backyard in Florida, and she loves gardening. She gardens daily and loves to grow fresh vegetables that we eat all summer long!

Question: How has Noel’s epilepsy diagnosis impacted your family’s mental health?

Debbie: Noel’s epilepsy diagnosis has taken a significant toll not only on Noel’s mental health but also on our family’s, because it is challenging to watch Noel suffer when she is experiencing a seizure. You never want to see one of your family members struggling, so that has been hard. Our family loves caring for Noel, but it can also be taxing, especially when Noel needs support with so many daily activities, like walking and bathing. There have been times when I have been unable to go to work because of Noel’s seizures. Luckily, Noel’s siblings have been able to pitch in and help care for her when I must work and vice versa. Our family is supportive of one another, and we all lean on each other when caring for Noel starts to take a mental toll.

Sometimes medical services are only one piece of the overall epilepsy puzzle, and mental health counseling can be a game changer for some epilepsy patients. In my experience with my daughter’s epilepsy diagnosis and working with other epilepsy patients, mental health is a critical element of care and can certainly have an impact on a patient’s quality of life. I would love to see more epilepsy specialists referring patients to clinical therapists, psychologists, and psychiatrists to work on patients’ mental health challenges in addition to their physical challenges. 

Question: Have you used any telehealth resources throughout your daughter’s diagnosis?

Debbie: Yes, we love telehealth! Noel typically doesn’t need regular physical exams, so we check in with her doctor via video visits frequently to discuss her seizures. In today’s environment with COVID-19, Noel is considered an at-risk patient, so it is great to have an alternative telehealth option for her to receive regular care from her doctor while not being put at risk of contracting COVID-19. I think one of the silver linings of the COVID-19 pandemic has been the rapid adoption of telehealth. It is a wonderful option for epilepsy patients, many of whom have trouble with travel.

Question: How can telehealth improve the future of epilepsy care?

Debbie: Telehealth is an exceptional but underutilized resource for patients with epilepsy. My daughter, Noel, and many other patients with epilepsy experience a decline in motor skills, making it hard to walk or travel to and from doctors’ offices. Especially in rural areas, where patients must travel long distances to a medical center, telehealth can be used as an alternative option to deliver quality care to patients. As a patient advocate, I hope that we can get more patients access to epilepsy specialist doctors and the right medications, and telehealth is certainly a tool that can help us achieve that.

End of Q&A

More Information About Mental-Health Related Programs Sponsored by UCB

A diagnosis with epilepsy can be challenging physically and mentally for families and patients. UCB is committed to supporting patients with epilepsy and their caregivers throughout their journeys. Our sponsorship of the Peer Support Program with the Child Neurology Foundation (CNF) further demonstrates our support for patients and caregivers dealing with mental health and epilepsy. CNF offers one-on-one virtual peer support to any caregiver of a child living with a neurologic condition, including those with epilepsy. Trained peer support specialists talk with families at any point, from diagnosis to management of their everyday lives, helping to find resources and navigate the emotional journey all caregivers experience.

In addition to our support of CNF, UCB recently established the Community Health Fund. We recognize that during the COVID-19 pandemic many families and patients have faced new mental and physical stresses. The fund supports the most vulnerable populations impacted by COVID-19 through impact-driven projects and social science research studies and aims to bring relief to communities. This initiative goes beyond our areas of clinical interest, seeking to meet the physical, mental, and psychosocial health needs of at-risk communities. This includes minorities, children, young people, older people, and those who are socio-economically disadvantaged, uninsured, underinsured, and/or living with certain medical conditions.

To learn about UCB’s Community Health Fund, visit: https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/UCB-Community-Health-Fund-Supporting-Vulnerable-Populations-Today-and-in-the-Future