Latiefa Niaken has been diagnosed with Idiopathic Intracranial Hypertension (I.I.H.) This is a neurological disorder in which cerebral spinal fluid (CSF) pressure within the skull that becomes too high and the disorder affects 1 in 100 000 men, women, and children worldwide.

It is life changing. No one knows what causes I.I.H and there is no cure for it.

Spinal fluid pressure within the skull accumulates and if it’s not drained it causes vision loss, confusion, headaches, speech impairment, blindness, nausea, tinnitus, fatigue and one can actually slip into a coma.

Niaken was diagnosed in 2010. She said that the doctors couldn’t say what it was and that they just placed a shunt in her head to drain the CSF. Niaken needs an operation every six months to drain the fluids.

“If I don’t have a shunt in then I’ll have to have a lumbar puncture at least once a week. A portion of my brain just stopped working, so they drain the fluid through my spine and it sometimes paralyzes me,” added Niaken.

According to Niaken, the normal CSF pressure goes around 16 and 20 but hers goes up to 30 and 49.

“I fought with doctors all over because they did not want to see me. The doctors just say that there’s nothing else they can do for me, I must just rest.”

Her medical fees cost about R 500 000 a year, and now she needs to have R 24 000 settle her outstanding medical aid bill.

“The government has long waiting lists, so they first want you to be on the verge of your optic nerve snapping before you get an operation.

“I’m currently still on medical aid but I’m struggling to pay it off. I haven’t been to the hospital for a while now, it’s been more than six months because my medical aid is in arrears. So I’m pushing my limits right now” explained Niaken.

An amount of R 8 000 needs to be paid before the September 7, or else her medical aid will cancel.

Her sister, Fairriel Genner said, “I don’t understand how they can say its 1 in 100 000 but there’s a waiting list.”

Friends and family have now taken it upon themselves to raise awareness of this disorder and to raise funds for their loved one.

“There’s one thing that I’d like to raise awareness about. As much as this is disabling to me, it is not recognised by the government.

“I applied for a disability grant, that would have made things a little easier. They just see it as a headache, it’s just all in my head,” said Naiken.

Loved ones are raising funds for her medical costs by having a Dance with me-an official fundraiser’ at the Bill Jardine Stadium on September 2. Pre-sold tickets go at R100 and R120 at the door. The event starts at 5 pm.

Contact Fairriel on 081 475 4219 or Shenaaz on 065 208 7430 if you would like to purchase a ticket or contribute further to assisting Naiken with her medical aid costs.

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