New technique gives Alia a second opportunity for a normal life
Having part of your brain removed may seem extreme, but for Alia Al Sayed it was the only option to live a normal life.
Alia first began having epileptic seizures when she was 2. Her fits were intense.
She would violently convulse, her eyes would roll backwards and she would lose consciousness. Sometimes she would even lose control of her bladder.
“I think the worst part is the constant fear that at any time she might have an episode and there would be no one around,” said Lemia, Alia’s elder sister and caregiver.
“Many times I would find her unconscious on the bathroom floor.”
The two Sudanese sisters live in Abu Dhabi together. Their parents died a few years ago leaving Lemia, 44, as the sole provider.
As a child, Alia, now 43, struggled to complete her education and eventually became so traumatised by her episodes that she developed psychological problems.
She became a recluse, avoiding people and refusing to go out to visit public places.
“One of my worst experiences while studying was suddenly coming to in class to find that I’d had a fit and had urinated myself,” Ali said.
Fear ruled both of them until Alia’s neurologist at a government hospital told her about a cure for her epilepsy at Cleveland Clinic Abu Dhabi.
Lemia was hesitant to begin with, because the procedure involved isolating the portion of the brain that caused Alia’s seizures and surgically removing it.
She was worried for her sister but Alia insisted that she wanted to undergo the surgery. However, neurosurgery is expensive and Alia’s insurance did not cover the costs.
“I earn about Dh6,000 and there was no way that I could afford the surgery,” said Lemia, who works as a translator at a government hospital. “They told me it cost more than Dh100,000.
“We applied for it to be covered under insurance anyway. I would do anything for my sister and if the surgery meant that she would be cured then I would do anything to have it done for her.”
Her request was rejected several times before approval finally came through. Alia underwent the operation on September 11.
Barely four hours after the procedure, Alia’s demeanour had completely changed, Lemia said.
“Her life drastically changed after the operation. She is happy and now goes out. She goes to the gym.”
Alia now plans to continue her education. After suffering an epileptic seizure almost every week, she is now cured of her condition.
But her insurance does not cover the costs of follow-up care at Cleveland Clinic Abu Dhabi.
“We are very grateful to the UAE’s leadership and the hospital for the surgery that has changed our lives, but we would like Alia to continue her care at CCAD and that is something I can’t afford,” Lemia said.
Alia has to continue taking epilepsy medication until she is slowly weaned from it.
Once she is, she should no longer require treatment for epilepsy.
We are very grateful to the UAE’s leadership and the hospital for the surgery that has changed our lives LEMIA AL SAYED Sister of former epilepsy patient Alia