R6-million medicines needed for Alex

Eastleigh resident, 28-year-old Alex McDonald, suffers from Paroxmysal Nocturnal Hemoglobinuria or PNH, a rare, life-threatening disease.

The disease causes spontaneous clotting and bleeding, which can occur at any time and without warning in any organ in the body.

“For me it is a daily struggle. I am on high dosages of cortisone,” said Alex, a former pupil from Edenglen High School.

Lifesaving medication for PNH will cost in the region of R400 000 per month and she will have to receive treatment for the rest of her life.

Annually, medical expenses will cost approximately R6-million.

“It is so expensive. I would need four vials of Solaris for the first month,” said Alex.

The family’s medical aid has refused to pay for the treatment and, after taking the medical aid to court, the court ruled in the favour of the medical aid.

“We cannot force the medical aid to pay for the medication,” said Genevieve, Alex’s mother.

But this has not deterred the family.

“We will do whatever it takes to get Alex the medication she needs,” said Genevieve.

Alex was diagnosed with PNH in January last year, after being sick for four years.

She started with severe abdominal pain and after numerous tests and an operation for Endometriosis, Alex was diagnosed with Budd-Chiari Syndrome.

As she kept getting sick with severe pain in her abdomen and swelling cause by the clots in her liver, a panel of doctors at the Wits Donald Gordon Hospital concluded that Alex needed to have a liver transplant.

“I was in liver failure, which was caused by the clots,” said Alex.

In February 2013, Alex received her liver transplant but in June of the same year, while she was driving back from work, she suddenly went blind in her left eye.

“I had the worst migraine that day. I contacted my hepatic vein specialist because with having a liver transplant any pain or ache could be a sign of liver rejection,” said Alex.

Her doctor at the time told Alex to take a Panado and have a nap.

At 3am two days later, Alex collapsed in the bathroom of her family’s house and she only woke up several days later in ICU.

She had suffered a clot and a bleed on her brain.

Alex underwent four brain surgeries and was hospitalised for six weeks.

She was only home for two weeks when she started to have panic attacks and then had a massive seizure, which was the result of bleeding on her brain.

Alex was rushed to hospital and in the space of 24 hours, she suffered two stokes which resulted in her slipping into a coma.

Scans showed her whole brain was covered in blood and doctors told her family that she would die. If she did live, she would spend the rest of her life in a vegetative state.

“I spent my 27th birthday in a coma,” said Alex.

When she did wake up after a month, she was completely paralysed on her right hand side.

Alex was released from hospital in a wheelchair and she slowly built up her strength until she was able to walk on her own again.

On Christmas day 2013, Alex’s fiancé left her after a four and a half year relationship.

“I was devastated,” she said.

In January 2014, Alex’s sister noticed a strange blood rash on her legs.

The rash was also in her mouth and her doctor ordered her to go for more blood tests.

She was admitted to hospital that day when the results showed her platelets had dropped to 1 000, whereas a normal person’s platelet levels were around 450 000.

“I started bleeding under my skin on my arms and legs and from my nose. My eyes even had blood in them,” said Alex.

After more tests, Alex was diagnose with PNH.

“We know of six other patients in South Africa with PNH,” said Genevieve.

“Solaris is the only medicine in the world which can save her life. There has to be a loophole in the system which we can use to get the medication in South Africa,” said Alex’s father, Tony.

He added that the family is willing to fight their medical aid in the Constitutional Court.

“Solaris medicines will also benefit patients with Aplastic Anaemia, which increases the scope of patients which will benefit,” said Genevieve.

On Wednesday night, May 29, Edenglen High School will host a fundraising evening for Alex at the Ottawa Creek Spur based at the Karaglen Shopping Centre.

The event will be held from 6pm to 9pm.