Mom Shares Experience of Having Twins with Tuberous Sclerosis Complex (TSC)

When April Cooper found that she was pregnant, she learned that she would have twins. She was excited as their family had never had twins before.

As per Newsweek, Cooper recalled nothing unusual about her pregnancy, even when she gave birth to the twins. They named the girls Amelia and Abigail. They were healthy, and everything was perfect.

But not for long. When the twins were two weeks old, Amelia had jerks. She said the seizures were not obvious yet, but they took her to the doctor. She remembered the doctor writing "possible seizures." Several tests for Amelia followed, including an ultrasound on her brain because her skull was not fully developed yet. The doctor then told them it was benign infantile seizures and that she would grow out of it.

The tuberous sclerosis complex (TSC) diagnosis

Two weeks after the check-up, Amelia started having different seizures. They immediately took her to the hospital. After a CT scan, the doctors finally told them that Amelia had tuberous sclerosis complex (TSC).

TSC is a genetic disorder that causes noncancerous (benign) tumors to grow in various body organs. According to Medline Plus, tumors can grow in the brain, kidneys, heart, and other organs. In some cases, it leads to significant health and developmental problems.

Individuals with the condition develop TSC-associated neuropsychiatric disorders (TAND). The disorders include hyperactivity, intellectual disability, attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder, aggression, and psychiatric conditions.

When they asked the neurologist what they should do, they were told to "pray for a miracle." The doctor said that Amelia was still too young for them to give a prognosis, but having a seizure at that particular age was not a good sign.

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TSC with the twins

Since Abigail and Amelia were identical twins, the doctors said that both of them would have TSC. When the twins were growing up, they were waiting for TSC symptoms from Abigail as well. Abigail had some seizures at some point, but it was due to an ear infection. However, Amelia's attacks were more disturbing. Amelia had tuber resection at two years old, which successfully stopped her seizures. At six years old, she was operated on for a brain tumor.

Cooper says her twins are now 22 years old. At 18, Abigail had seizures, and it was a challenge to find the proper medication for her as she had a lot of mental issues. Now at 22, Abby's seizures are controlled. She is taking community college courses, and she is applying for the Pathway at UCLA Extension course for young people to have independent living skills. She dreams of going to college to get a degree.

On the other hand, Amelia had a seizure at the age of 20, after 18 years of being seizure-free. She is working at the school she graduated from in 2021. They hired her to work three times a week doing office chores and greeting people.

According to TSC Alliance, nearly one million people worldwide have TSC. In the U.S., around 50,000 are diagnosed with the disorder. Cooper tells parents whose kids are diagnosed with TSC that it is not so bad. There is hope.

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