Amber's story

After one particularly bad episode, we took her to an optician, thinking it might have something to do with her eyesight. He was very thorough, and after identifying pressure behind her eyes, he made an immediate referral to the hospital.

Amber underwent a lumbar puncture to relieve the pressure before having both a CT scan and an MRI. These tests identified a clot on her brain.

She was given rivaroxaban and remained in the hospital for 10 days before being released on oral blood thinners. At this time, her blood was tested for APS, but we later found out the results were inconclusive, and no further tests were ordered.

Approximately six months later, Amber started to complain of disturbances in her sight, including greying out and momentary loss. We took her back to the same optician, who again identified swelling on the optic nerve and sent her straight to the hospital. She was quite ill during her stay this time, and we feared that her eyesight might be permanently damaged.

Another MRI confirmed a further clot. It was then that she was diagnosed with APS, and our journey of learning and management began. Amber continues to lead a full and active lifestyle, moving into kickboxing coaching (as fighting wouldn’t be advisable) to earn her black belt.

At 14, she is still quite young to fully understand the limitations that being on warfarin for the rest of her life imposes on her and the potential for further health complications.

Our hope is that future research will identify a method of controlling APS without resorting to blood thinners.