(music). Those who suffer from the range of seizure
disorders known as Epilepsy carry a frightening and confusing burden. Their seizures can be
life-threatening, and they live with the uncertainty of when the next seizure will occur. We start
our discussion with two people who generously are sharing their personal experience with
Epilepsy in order to promote a greater understanding. I'd like to introduce Alan and Lakeisha. Good
morning to both of you. Thank you.
Thanks for being here. Alan, I want to start with you. I was reading here you have lived
with Epilepsy your entire life. Yes.
Tell me your story. My first seizure started when I was 8-years-old.
Wow. But I wasn't officially diagnosed until I
was 13. Not much known about Epilepsy back then, but once I was diagnosed we had a little
family meeting to decide do I press on with life or do I cut back on life. And that pressing
on meant stay with basketball, stay with baseball. Now, were there seizures included in those
games? Every time. But you did not let it affect you or stop
you from doing what you loved? I had to keep doing it.
Lakeisha, let me ask you something. I know your seizures came a little bit later in life,
and they occurred pretty suddenly. Tell me what happened.
Well, my seizures started in my 20s. I was a single mom of a 5-year-old, and I was getting
ready to go to work one day. And my daughter decided she wanted something to eat before
I dropped her off, and off we went to the store. I came back home, getting ready to
go to work, and I woke up six hours later for work. I just assumed I was late for work.
And, unfortunately, I came downstairs, the door was still ajar, and the meat was still
at the front door. And your daughter?
My daughter was afraid to come near me. Really?
Yes. So she probably witnessed something that you
didn't even know happened. She did. She actually called it, "The Monster
Game." Oh my goodness gracious. And then did you
have another one after that? I did, two years later, while driving on the
Expressway. I veered across three lanes of traffic and crashed my car, and it left me
in wheelchair for a couple of years. But then I was finally diagnosed with Epilepsy.
And your road to recovery is such a positive one. You, Alan, I believe are helping other
children and adults and mentoring? Yes. Every time I get a chance to talk to
children and their families or really anyone for that matter, I take that opportunity.
And I try to really stress on three points: how to keep better records so that you can
sit down with your doctor and make decisions about is it working or not, how to play by
the rules - if a doctor says "do this and this and this," then you must comply, and
then how to stay focused because there are many new treatments coming. Yours may be the
one right around the corner. And look at me, I had seizures for 60 years, and I just retired
from a great job, and I haven't had a seizure now for almost three years.
Amen. That is wonderful. And you, Lakeisha, you are also a life coach?
Yes, I am. I life coach people who still want to find their purpose despite life's challenges.
That's what I do. I help people who have possibly even Epilepsy, and they want to find their
life's purpose because we know things happen in life.
Thank you so much, both of you, for what you're doing, for mentoring others, and for spreading
the word on Epilepsy. I do appreciate your time. And when we come back, we're going to
take a quick break because we're going to speak with two more guests who will tell us
about the progress being made. Obviously, there's great progress. I have two examples
here. The progress in research and support for those living with Epilepsy. Stay right
there. (music).
(music). We're talking about Epilepsy. Welcome back
everyone, and joining us now to discuss advances in understanding research and support for
those who suffer with this debilitating condition are Susan Axelrod, Susan is Founding Chair
of CURE, Citizens United for Research in Epilepsy, and Jeff Wren, Executive Vice President Neurology
and Head of the Neurology Patient Value Unit at UCB. Welcome to both of you.
Thank you. Thank you.
Earlier, we heard from Lakeisha and Alan, powerful stories from two people suffering
from Epilepsy yet doing something so great with their lives today. Susan, you're doing
something amazing, too. You founded a foundation. How did it come about?
My work came about in Epilepsy when my daughter was 7-months-old and I found her blue and
limp in her crib one morning. I put her to bed a normal healthy happy baby, and I thought
she had died. Oh my gosh!
I picked her up and took her to the Emergency Room where they identified what was going
on as seizures, and she had repeated seizures. So, the first time she was in the hospital
for a month, and I brought her home having six seizures a day. Subsequently, for the
next 18 years, she continued to have sometimes as many as 25 seizures a day. We went through
20 different drugs. We went through brain surgeries, brain stimulation…
I can't imagine what it did to you and her for that matter.
Yes, well it's motivated what I do with my life now.
And let's talk about that. You founded CURE. And, obviously, because of what you experienced
with your daughter, you're doing something so great. What exactly is it?
So, I met a few other moms who were in similar situations with their daughters. And we started
looking and found that there was a real void in the advocacy community. There was really
nobody out there screaming for more research. There was nobody out there advocating for
the 30% of the population with Epilepsy who do not enjoy seizure control. So, we set about
to really change that paradigm. And, Jeff, let me bring you in. Let's talk
about that research. I was reading here that UCB is a leader in research and development
of treatments for Epilepsy, and when it comes with patient and caregivers to improve their
lives. That's really important. You guys have really taken on the role.
Yes, we are leaders in Epilepsy research, and we're very proud and quite humble to work
with patients and stakeholders because they're involved in the process with us. And our goal
at UCB is pretty simple. It's bringing together the best in the industry, making sure that
we're collaborating and doing what we need to do to make sure that we can get the right
product to the right patient at the right time because that is what is critical for
our patients. And what strategies are you taking on to combat
this disease? It's a multifaceted approach. It really begins
with patient insights. There's no way that we can develop innovative medications in a
silo. So, we need patient insights. And from patient-inspired science, we're able to connect
with academic institutions, governments. We want to get the biggest, best, and brightest
and collectively look at what is available to enhance our research. And I think we'll
continue to see the advancements in Epilepsy as we sort of come about it from this type
of protocol. So the big picture here is medical and non-medical
as well? Yeah. You can develop the most innovative
medicines in the world, but if they don't reach patients, no good comes from that. And
so the patient journey is complex, and what we need to do is assist the patients along
that journey. We partner with patient education or patient groups and we've developed one
of the largest online epilepsy communities in the world. So, they can share information
and engage, and that's called Epilepsy Advocate. Right. We've worked with seizure response
dogs through an organization up in Georgia where they train dogs to help patients walk
through daily life, and actually many times forewarn of seizures. So, these types of initiatives,
we're very proud to be involved in as well because it's more than just a product that's
critical, but it wraps solutions around the product to improve the standard of care.
And creating awareness, Susan, you've taken it on to do that. God bless you for that.
But more needs to be done? Much more needs to be done. We still have
this 30% of patients who are not responding to current treatments, and you know as Jeff
said we really really want to be able to tailor these treatments to the patient at the right
time so that other patients, like my daughter, don't have to wait 18 years to get the right
treatment. And, Jeff, for our viewers out there who would
like more information, where can they go? Is there a website?
There are a couple, UCB.com as well as EpilepsyAdvocate.com. Thank you so much for the information and
what you're doing to create that awareness and find that right treatment at the right
time. I can't leave without asking how is your daughter today?
Lauren is doing really well. She is 34, has been seizure free for 15 years now on a new
medication. Amen.
So, we're very grateful. A lot you have done. God bless you. Thank
you so much, Susan. And for more information, again, it's UCB.com or EpilepsyAdvocate.com,
or go to our website, TheBalancingAct.com. (music).