Raise funds for those affected by cystic fibrosis

Lorryn Nell, a 31-year-old Midrand resident, was diagnosed at the age of two with cystic fibrosis, a rare disease which according to research is inherited and life-threatening. The disorder damages the lungs and digestive system making it hard to breathe, and sufferers cough up mucus resulting in frequent lung infections in the long run.

Belinda Nell, who is Lorryn’s sister, is raising funds for Lorryn and wants to create awareness about this life-changing disease. Belinda said the disorder is classed as an orphan disease as it is not well known like cancer or HIV. “Lorryn was eventually diagnosed at two years old in January 1990 after testing at the Johannesburg General Hospital Cystic Clinic. It was found that Lorryn and our sister Jennifer had the faulty cystic fibrosis gene but unfortunately Jennifer did not survive, leaving us in 2014.”

Belinda, who handles media on behalf of her sister, was asked by the Midrand Reporter about the kind of challenges Lorryn faces on a daily basis.

She explained, “Lorryn has never been able to work because of the treatments. The disorder requires attention, therefore she had to be taken care of by her family.

“As cystic fibrosis is a terminal illness with no cure, the sufferer faces a life of continual hospitalisation for intravenous antibiotic treatment and intensive physiotherapy to lessen the effects of the build-up of the bacteria prone mucus in the lungs and pancreas.

“This causes a loss of lung function and deterioration of the pancreas which also causes diabetes.”

Belinda said the family was also struggling to pay for her sister’s medical bills. She added that there were treatment breakthroughs in the Unite States of America.

“Treatment consists of a course of tablets that are capable of increasing lung function to as much as 32 per cent and halts the progression of the disease but owing to all sorts of medical politics by the manufacturer, availability in South Africa is very low on our agenda.

“The cost of the treatment is not affordable, it equates to approximately

250 000 dollars (about R3 500 000) per annum. There has been a generic developed by a South American pharmaceutical company and can be obtained for approximately R400 000 per annum which is a massive saving in cost and we are currently working on a solution to obtaining this treatment for Lorryn and other cystic fibrosis affected families our country.”

Belinda said this treatment has become their main focus as Lorryn’s lung function is now sitting on 21 per cent and desperate funding is needed to have this new breakthrough treatment delivered to them in order to give Lorryn and others hope.

If anyone would like to donate to this cause, there is a ‘BackaBuddy’ campaign titled, ‘No Price Tag on Lorryn’s Life’, created by Belinda to take up the fight for her sister’s well-being. To donate, visit

www.backabuddy.co.za/loz-nell

Readers are encouraged to research cystic fibrosis and educate themselves on this genetic disorder which was a hidden, silent death in the past but is now becoming more prevalent with statistics showing an alarming increase in cases across the world.

Belinda said that she is so afraid that in two or three generations’ time the common health drives will be ‘know your HIV status, know your TB status, know your diabetes status and know your cystic fibrosis status’.

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Reducing incidents of misdiagnosis by raising awareness of cystic fibrosis