Dravet Syndrome and Lennox-Gastaut Syndrome: Perspectives from the Patient Journey - Episode 19
Mary Anne Meskis; Tracy Dixon-Salazar, PhD; Kelly Knupp, MD; and Joseph E. Sullivan, MD, provide advice for physicians treating patients with Dravet syndrome or LGS.
Joseph E. Sullivan, MD: Kelly and I, are both open-minded and we embrace the involvement of this it takes a village but sometimes you get the questions about trying something that seems so out there. It's like oh boy, where am I going to go with this one? I can imagine there are some providers out there that, oh that's just going to create more work for me because they're going to ask me all these questions that I don't know the answer to. What should providers know about the value and again we've touched on it but maybe just a summary statement, the value of connecting with sort of a disease specific group? Mary Anne, you want to go first?
Mary Anne Meskis: The biggest thing that we say is it's so important for our families to be able to find their people and in the long run it makes it easier for the professionals because if families have a place where they can ask questions of others who understand what they're going through it's going to cut down on the questions that come back to the physicians and the providers. It just offers peace of mind, overall because they feel like they start to get a better understanding of what this disease is like and what the trajectory might look like, things that they should be watching for it's important to give them that sense of empowerment.
Tracy Dixon-Salazar, PhD: I agree. A few years ago, we flew in Dr Ingrid Schaefer, Pediatric Neurologist, Clinician-Scientist, President of the Australian Academy of Health and Medical Sciences] an epilepsy expert, world renowned and our families were like we met Karen from Ohio, this was the best conference ever and that's it. The number one thing we do is we connect people to somebody else who is walking in their shoes, and I would just say you can't underestimate it. This is a hard, horrible journey, and having other patients and families that are on it to help you navigate is crucial. I know a lot of physicians would also think these are the moms who are cooking up weed in their kitchen pressure cookers, and yes we are, But both the LGS and journey foundations, we are scientifically led organizations. We are willing to have these tough conversations about pressure cookers and weed and cooking that, but also we're willing to come forward and talk about the science. We try to make fact-based and provide the information as much as possible to our families, but then also allow them to save space to keep talking about how mercury in retrograde is causing all their kids' seizures too. It makes things easier in the long run for the clinician because we want to help you. We want to have these conversations with the families. You can't do it all, and we respect what you guys are asked to do as clinicians that's just above and beyond like the paperwork nightmare oh my gosh see the patient in 10 minutes and get them out of there. I would just strongly say connect in with us and we will help in the long run, that's what we're here to do.
Kelly Knupp, MD: I just want to point out from the physician perspective, both of your organizations and other organizations all have scientific advisory boards and that can be helpful as well for a provider looking for a resource to figure out who's on the scientific advisory board and if you're struggling with something with a patient, most people on the scientific advisory board are very happy to talk about that particular disease and share what's known and what isn't known. So buried within there are some other resources for providers as well.
Joseph E. Sullivan, MD: As you mentioned Tracy you have conferences, Ingrid, people who are watching and I'm sure would love to come and have a conversation with her, Mary Anne, the Dravet Syndrome Biennial Conference, right where it brings experts from all over the world both on the basic science and on the clinical side plus the families. It gets a whole mix of people together in one place in order to continue to move things forward.
Tracy Dixon-Salazar, PhD: I would just say I think if we're speaking to providers, I would just say 2 things. One is, the LGS diagnosis may not be all that useful in the day to day of a provider who is seeing a patient who's had LGS for 10 years and we're just now trying treatment after treatment, but it means something to us as the families. It can be life-changing to find your community. The other thing I would just say is please don't give up on us. I know that there's been some surveys done where physicians feel like they failed in some way because they can't stop the seizures in this patient and then they see the progressive brain damage over time or the person has been seizing so many times and they have multiple chronic disabilities at this point and what's really going to walk, I'm just going to write a script. We never fault physicians for that, but we can't give up and so when you guys give up on us it breaks our heart because we can't give up on our families. I mean yes if you need to bring in a specialist, great another member of the team or if it's time for you to transition care because they're getting older, whatever but I would just say give the diagnosis and don't give up on us please. There is a lot of in the future for this one stop to be there's nothing we can do epilepsy, if there isn't nothing we can do. There are things we can do.
Joseph E. Sullivan, MD: Well, I think that is a perfect note to close on. I couldn't have said it better myself, Tracy. Thank you for watching this NeurologyLive® peer connections. If you enjoyed the program, please subscribe for our E-newsletters to receive upcoming programs and other content right in your inbox.
Transcript Edited for Clarity