Tuberous sclerosis, (TS), a rare multilayered condition, has brought several challenges and benefits to the Hargreaves family.
For Lisa Hargreaves, a mother who has raised a son with TS named Brandon, bringing up a child who has the condition “at times can be a little difficult and a little sad.” However, she also said that it “mostly has been amazing to see what a wonderful man he has become.”
Tuberous sclerosis is a condition caused by genetic mutation, affecting roughly 50,000 people in the US according to the Nagakawa; it leads to an individual developing several tumors that are not necessarily harmful within various parts of the body such as the skin, brain, kidneys, lungs, heart, and eyes.
Hargreaves said that the experience of raising a child with TS has been “overall, mostly positive.” But she hopes that research helps “find a way for Brandon not to have seizures and ultimately to find a cure.”
Director of Clinical Research at TS Alliance Jo Anne Nagakawa said that she is not exactly sure when a cure will be discovered. She guessed that one may be found within 10-20 years, and since a meeting she had in Washington more than 10 years ago with 80 research clinics to talk about steps to take towards TSE research, she also said that they have come so far.
Nagakawa said that some of these effects include angiofibroma, which appear on the skin, a seizure disorder known as epilepsy, along with intellectual disabilities.
According to a summary of a Constituent survey conducted by Dr. Roberds at TS Alliance in December 2014, when people were asked about several aspects about their condition and to rank them on a scale ranging from not important to very important, “the two most highly ranked neuropsychiatric aspects were learning disabilities and intellectual disabilities.”
In addition, the survey also reveals that two other aspects that were not far behind on the ranking scale were “autism related communication and social problems.”
Although Brandon does not have epilepsy nor significant communication issues related to autism, he definitely has some disabilities that make things more difficult for him.
In regards to the many challenges that Brandon faces, Hargreaves said that, “one of his challenges is whether or not he’s going to have a seizure,” adding that he has anxiety from time to time and has to work a little harder, particularly in the areas of academics such as math and science, which give him the most trouble.
Apparently, Brandon has been able to deal with this anxiety. He said that he has been taking medicine for a few months — Clonazepam, which takes the form of a tiny pink pill smaller than a caper. According to Brandon, this has helped and there has been no seizure activity in March.
The seizures that Brandon has experienced can be difficult to deal with. He has said that the most common effects of the seizures have been gasping for air, sleeping for an hour and not having any recollection, and an inability to communicate.
Despite these shortcomings, Hargreaves said that “he has grown to be a wonderful man who has lots of good assets, and he has overcome many challenges.” She also said that “he’s a good runner and has a great imagination for writing.”
As it turns out, Brandon and Mrs. Hargreaves have found that people have been very accepting despite the fact that Brandon stands out, with Mrs. Hargreaves saying that other members of the family have been very supportive. He has loving grandparents who celebrate when there is triumph and have been there for more difficult times said Hargreaves.
Although Brandon is not attending college in the near future, he currently has a job at Shaws and a girlfriend, and has made improvements in all aspects of life as he has matured over time.
For people like Brandon, teenagers and young adults who live with TS, social life at school can be quite difficult to endure. Brandon, however has not mentioned any type of bullying from his peers who do not have TS, in spite of the obstacles that he faces daily.
According to Brandon, “most people stay away from me.” He also said that he is “treated very nicely” and has not been bullied that much. Adding, “respect me for who I am.”
Brandon also respects people with disabilities for who they are. He understands that many individuals who live with various complications have many obstacles to face. For those people, which includes people who have TS, Brandon has offered a piece of advice: “Believe me that you are not alone.”