Distraught family seeks state help for son’s bizarre sleeping illness

2013-03-18 00:00

A PIETERMARITZBURG family is living in a state of constant anxiety because of their son’s bizarre health condition.

Callie Calitz (50) suffers from a rare medical disorder – narcolepsy, cataplexy and sleep apnea — it is a mouthful but it is no joke.

He falls asleep whenever and wherever. Even in the middle of a conversation, parts of his body go slack as if he is paralysed. He has absolutely no control.

For Calitz it has had devastating consequences — he had to give up his teaching job of 25 years and his live-in accommodation at the Standerton High School hostel.

His pupils were scared of him and his colleagues found his behaviour unnerving. His headmaster suggested that he be medically boarded.

Calitz cannot drive as he could kill himself or someone else on the road. The condition is believed to be triggered by a traumatic event, which may have been his divorce a few years ago.

At present he is without any medication for the condition because his medical aid, GEMS (Government Employees Medical Scheme) does not recognise the condition as chronic. He ran out of benefits in January.

A GEMS adviser said that Calitz should upgrade his scheme, but he cannot afford to. His only option is to lodge an appeal with the Council for Medical Schemes.

Earlier this year, his parents brought him to Pietermaritzburg to try and get him some help at the local government hospitals.

Calitz desperately needs special medication from a specialist neurologist. His previous neurologist is in private practice and Calitz can no longer afford to see him.

Dr Pieter Kritzinger, a private neurologist in Pretoria, referred Calitz to state hospitals for further treatment. In his referral he says: “Calitz has been medically boarded from work and suffers from chronic narcolepsy and cataplexy.

“He is unable to continue with any kind of work until his condition is under control. The condition is incurable and his disability is irreversible.”

The doctor lists the medicines that Calitz needs to keep his condition under control.

Calitz was told the waiting list to see a neurologist at Steve Biko Hospital in Pretoria was two years long. The family decided to intervene and get him help in Pietermaritzburg, but he was pushed from pillar to post between Townhill and Grey’s hospitals.

At these hospitals he was told he was not eligible to receive medication because he was already a member of a medical aid scheme, even though his benefits had expired.

He needs tri-cyclic anti-depressants for the cataplexy and modafinil (Provigil) for the narcolepsy. This is a schedule 7 medication and costs about R3 000 a month.

Family spokesman Patrick Steyn said: “He is a living time bomb. He has often fallen asleep with a cigarette in his hands. He is so depressed. Even doctors look at him strangely as they have never encountered anyone with his condition.”

Episodes are triggered whenever Calitz experiences high emotions like anger, sadness and happiness.

KZN Health Department spokesperson Sam Mkhwananzi said that access to health services was enshrined in the Constitution and it seemed strange that Calitz was not able to access medication.

“I do not know the exact circumstances of his situation, but I can only speculate that perhaps he should have been admitted and treated as a casualty and his case investigated. It looks as if there has been a procedural complication. We do not deny treatment to sick people, but there are procedures to be followed.”

Mkhwanazi urged the Calitz family to contact his office.

• trish.beaver@witness.co.za

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