Alia Al Sayed suffered from epilepsy for more than 40 years prior to having brain surgery at Cleveland Clinic Abu Dhabi
Epilepsy sufferer is a 'new person' after brain surgery in Abu Dhabi
Having a portion 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 two years old. Her fits were intense, she would violently convulse, her eyes would roll backwards and she would lose consciousness. Sometimes she would even wet herself.
“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. Many times I would find her unconscious on the bathroom floor,” said Lemia, her older sister and care giver.
The two Sudanese sisters live in Abu Dhabi together. Their parents died a few years ago leaving Lemia, 44, to be the sole provider.
As a child, Alia, 43, struggled to complete her education and eventually because so traumatised by her episodes that she developed psychological problems. She became a recluse, avoiding people and going to public places.
“One of my worst experiences while studying is suddenly coming to during class to discover that I had a fit and had urinated on myself,” Alia said.
Fear ruled over both of them up until Alia’s neurologist at a government hospital told her a cure for her epilepsy was available at Cleveland Clinic Abu Dhabi.
Lemia was hesitant to begin with, the procedure involved isolating the portion of the brain that caused seizures and surgically removing it. She worried for her sister but Alia insisted she wanted to undergo the surgery.
Another problem then presented itself, neurosurgery is expensive and Alia’s insurance did not cover the costs.
“I earn around Dh6,000 and there was no way that I could afford the surgery. They told me it costs more than Dh100,000,” said Lemia, who works as a translator at a government hospital.
“We applied for it to be covered under insurance anyway. I would do anything for my sister and if the surgery means that she will be cured then I will do anything to have it done for her.”
After her request was rejected several times before approval finally came through. Alia had her surgery on September 11. Just four hours after the procedure, Alia’s demeanour changed entirely, her sister said.
“Her life drastically changed after surgery. 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, Alia is now cured of her condition. But her insurance does not cover the costs of follow-up care at CCAD.
"We are very grateful to the UAE's leadership and CCAD 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 her epilepsy medication until she is slowly weaned from it. Once she is, she should no longer require further treatment for epilepsy.