Show notes
In this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuberous Sclerosis Associated Neuropsychiatric Disorders and its one of the most challenging aspects of managing a TSC diagnosis and is a clinical manifestation of TSC, along with the other manifestations.
Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND.
Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about.
“It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know,...
Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND.
Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about.
“It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know,...
