Woman needs R80 000 in medicine a month

A rare, life-threatening blood disorder, PNH sporadically causes clotting and bleeding

JOHANNESBURG: Alexandra McDonald is a one in 5 million person. Suffering from a rare blood disease, the once active and sociable 28-year-old can rarely leave her home for fear of infection.

And the only possible treatment will cost her family more than R80 000 a month, a cost they cannot afford.

At 22, McDonald was happy, healthy and engaged to the man she believed was the love of her life.

But now, after being diagnosed with paroxysmal nocturnal haemoglobinuria (PNH), the once independent young woman has been bound to her parents’ home – between lengthy stays in hospital – for the past six years.

PNH is a rare, life-threatening blood disorder that sporadically causes clotting and uncontrollable bleeding with- out warning. It affects only one in 5million people and the cause is unknown.

Her journey to find out what exactly was wrong with her took more than four years.

During that time McDonald had to endure a liver transplant, a procedure for endometriosis and several brain surgeries to treat blood clots.

Half of her body became paralysed after she suffered a stroke in 2013. All of which the family later found out were caused by the symptoms of PNH, which doctors finally diagnosed at the beginning of last year.

McDonald’s life hangs in the balance as a result of the continued clotting.

“She can have a stroke or shoot a clot at any time. We don’t stop worrying,” said McDonald’s mother, Genevieve Jorge.

McDonald desperately needs life-saving medication called Soliris.

However, each vial of the treatment costs about R80 000, as it is only available overseas. It will have to be imported and medical aid does not cover the costs of the medication.

Jorge said McDonald’s current medication and treatments cost the family R14 000 a month on top of what medical aid covers.

According to McDonald’s haematologist, who declined to be named, Soliris is the only medication that can potentially save her life.

While the current medication keeps her alive, it leaves her with debilitating side effects and does not control the PNH attacks.

A bone marrow transplant has helped others with the disease, but this option is not viable for McDonald because she has already undergone a liver transplant.

Her doctor said a bone marrow transplant could cause her body to reject her new liver.

“She can live a normal life again if she just gets this medication; the meds she is on now barely keep her stable. There are times when her platelets have dropped to 1 000,” Jorge said, adding that a normal platelet count exceeded 150 000.