Health worker needs help to battle rare brain condition

Four years ago, Alicia Robinson bared her soul to the public, pleading for help to save her eyesight. Today, at 35, the Spanish Town resident is still fighting the same relentless battle against a condition that threatens to take her vision for good.

Robinson suffers from idiopathic intracranial hypertension, a frighteningly rare condition. The neurological disorder causes dangerously high pressure around the brain, triggering blinding headaches, swelling of the optic nerve, nausea, and creeping vision loss.

There is no cure. Only management.

Robinson's life has been a relentless cycle of hospital visits, medical procedures, and overwhelming uncertainty. In 2024, a brief surgery offered her a fleeting respite, but after a few months of relief the symptoms returned.

"The condition is really difficult," she said. "I was okay for a few months. Then I just started getting sick again."

Now fearful of permanent vision loss, Robinson now faces another operation -- a revision of her lumbo-peritoneal shunt, a delicate procedure to repair or replace the tiny tube in her lower back that drains excess fluid from her brain.

The surgery could cost as much as $6 million. Even with insurance, she estimates she will need between $2 million and $3 million out of pocket. Right now, she has nothing close.

"I am nowhere," she told THE STAR. "I really don't have any money."

Though she continues working as a clerk at a medical centre, her monthly medication bill exceeds $200,000. Some months, she simply cannot afford it. She disclosed that she was recently in need of medication but was unable to purchase it.

"I didn't have the money to buy, and I had to tough it out. It is not easy. My symptoms come out of nowhere. I can be talking to you and a few seconds later I end up in the emergency room," she said.

To survive, Robinson has hosted cake and jerk sales. The funds help, but barely dent the mounting costs. Sometimes, she says, shame creeps in.

"I'm trying to come up with the money to go for surgery... Sometimes I feel like people are tired of me asking for help. But I have to put pride aside and ask because I need help. I really do," she said.

Yet even in her suffering, Robinson has found purpose. In 2022, she created a support group for people living with idiopathic intracranial hypertension. Today, it has grown to more than 10,000 followers across social media platforms.

"I want to help people understand living with a condition. And for those persons who are silently suffering in the journey, I just want them to feel that they're not alone. I mean, a lot of persons with the condition get depressed easily and it plays on your mental health, especially when you don't have support," she said.

Describing idiopathic intracranial hypertension as "an invisible illness," Robinson said many patients struggle to be believed.

"You are not believed, you are shunned... but it's way more than just a headache, it's real," she stressed.

"And a lot of people are afraid to talk about the condition, talk about what they're experiencing, because, you know, you go to the emergency room, it's rare, they don't know what you're experiencing and they'll tell you, 'Oh, you just have a headache.' And they'll give you some meds, send you home."

As she quietly manages her duties at work while coping with recurring nausea and intense headaches, Robinson admits her greatest fear is losing her sight.

"It's hard. A lot of people don't understand that living with an invisible condition, you look fine on the outside, but inside you are tearing apart. The fear of losing your vision is scary. That's my biggest fear right now, because my optic nerve has been stolen. I have a blockage in my vision. My intracranial pressure is high," she said.

Still, she remains committed to her advocacy work.

"Sometimes I'm saying, God how mi a help people, but I can't help myself. I feel good that I'm able to help others, but it's really not an easy journey. It hard," she said.

You can help Alicia Robinson hold on to her sight--any contribution, big or small, can make a life-changing difference in her fight against this relentless condition.

Name: Alicia Robinson

Branch: Spanish Town

Account number: 000858918

Branch #: 80275

Bank: BNS

Name: Alicia Robinson

Branch: Half-Way Tree

Branch #: 000300771

Account number: 305014990

Bank: NCB