By Preston Fitzgerald
TSC and TANDA
Tuberous Sclerosis Complex, or TSC, is a very complex disease that can affect each person in many different ways, from the brain and kidneys to the lungs and eyes and much more. There is currently no cure, but I believe we are getting closer each day. This article itself focuses more on the neurological toll it takes on the children and not the other organs. Refer to the article “What is Tuberous Sclerosis?” on Different Brains or look on the TSC Alliance website for more basic information on this condition.
What is “TAND?”
“TAND” has become a popular term in recent time within the TSC community. “TAND” is an acronym that stands for “TSC – Associated Neuropsychiatric Disorders.” This explains the different issues that TSC patients have a possibility of having or developing later in the neurological aspects of life The umbrella term mentions different behavioral, psychiatric, intellectual, academic, psychological, and neuro-psychological issues. Each section below breaks down what kind of issues typically come along with it. Everyone who has TSC is different, so the list is so broad to try to cover as many people as possible.
The Six Categories
First of all, there can be many behavioral issues that come along with TSC. Those who have TSC have a hard time dealing with their emotions. Often times, we have anger like feelings such as temper tantrums or depression. People have to be watchful because we can also tend on acting self-injury. We also get anxious over the small things and like to follow routines because we don’t like to deal with change. Those with TSC can be hyperactive and can have trouble concentrating on tasks. We also have poor eye contact. Finally, it is possible to have sleep and eating problems, which unfortunately can lead to higher chances of seizures or not getting enough nutrients if children are accustomed to only eating a few things.
Next, there are some psychiatric disorders than can emerge from the behavioral issues that were explained above. TSC patients often tend to have some symptoms of autism or ADHD. We can also have anxiety or depressive disorders. There has also been research done to show that we can have intellectual issues. Intellectual disabilities mainly focus on areas that we can struggle in such as judgement, problem solving, and communication. Another part of intellectual issues is the uneven profiles, which means that we may have very strong skills in some aspects of life, but we deeply struggle with others.
Fourthly, we seem to have issues when it comes to education. Depending on how much TSC affects us, we may need large amounts of intervention and therapy or hardly any at all. Those are diagnosed that do not have behavior issues are usually put in special education programs for extra help, most commonly with reading, writing, spelling, and mathematics. This ties back to our struggles with hyperactivity, concentration, and paying attention. This also troubles us in our adult life as it becomes difficult for us to get large amounts of work done during the day.
Fifthly, TSC patients have problems with psychological attributes. It is common for people who have TSC struggle with their self-esteem and self-efficacy. We also suffer with relationship difficulties due to our awkwardness in social situations such as difficulties in maintaining a conversation, paying attention, and keeping good eye contact. If we manage to develop a serious relationship and get married, we often struggle with parental stress if we have children.
Finally, there are neuro-psychological issues that are part of the whole package as well. This part explains that we have trouble with other attributes that go along with the behavioral and cognitive issues that were previously mentioned before. This mention sustained attention and attention switching once again along with dual tasking and memory recall, spatial working memory, and cognitive flexibility. Memory recall is short term while spatial working memory is more long-term. Cognitive flexibility is being able to switch attention from one task to another and being able to solve sudden issues without getting upset.
I was diagnosed with Tuberous Sclerosis Complex (TSC) when I was seven months old on August 14, 1999. My parents were told that I would most likely never be able to walk, talk, or do anything for myself for my entire life. For some with Tuberous Sclerosis, this is true. For me, the doctors thankfully turned out to be wrong. With a lot of help, my family and team of doctors was all of the support I needed to reach most of my life milestones on time and avoid dyspraxia. I lived most of my childhood without having a seizure at all. I graduated high school at eighteen and graduated in 2022 from the University of North Texas with my Bachelor’s. I am now working in the hospitality industry and take two medications to keep my seizures under control and another to help stunt the growth of the tumors in my kidneys. As for TAND, I struggle with most categories in different ways, especially with Autism, anxiety, and self-esteem. I also had trouble with math and making friends while in school. Bottom line is even though I struggled with several different categories during my lifetime, I still managed to graduate Magna Cum Laude in college and make several lifelong friends along the way. Even if things didn’t go well, I didn’t give up and I didn’t let this condition stop me achieve my goals.
In conclusion, TAND is very extensive, and it covers many if not all the different issues that TSC patients can deal with in their lifetime. I hope this helps explain the meaning TAND and what can come along with it. On the TSC Alliance website, there is a checklist that parents of infants or young children can go over. The children are tested during each stage of childhood to see their progress and gives doctors an insight into how to treat them as best as possible from there.
Preston Fitzgerald is a recent graduate from the University of North Texas with a degree in the Hospitality field. He was diagnosed with Tuberous Sclerosis at seven months old and has taken great strides to surpass his expectations while having a learning disability. He uses his current life status as an advantage in order to spread the word in order to find a cure. While he is not being an advocate for TSC, he enjoys watching sports, traveling around the world, and spending time with his family and friends.