New lease on life for CF patient

He is active, holds down a demanding job, and placed first in the novice section of a local body building contest.

Cystic Fibrosis patient Mark Whorms

Cystic Fibrosis patient Mark Whorms, centre, accepts a new Vest Airway Clearance System from trustees of the Cayman Islands Cystic Fibrosis Trust Jon Fowler and Christina Kirkaldy. Fellow trustee Tiffany Polloni is missing from the picture. Photo: Elphina Magona

Just to look at Mark Whorms you’d never guess that he has cystic fibrosis, the chronic disease which attacks the digestive system and lungs.

While he is one of five individuals known to have cystic fibrosis in Cayman, the local numbers could be higher for one of the most common inherited illnesses.

Diagnosed with CF in early infancy, his future looked bleak. Fast forward to the present and the 24-year-old Savannah resident has a lot to be happy about.

Namely the recent gift of a CI$10,000 Vest Airway Clearance System by the Cayman Islands Cystic Fibrosis Trust. The device has given him a new lease on life.

According to the product details, the inflatable device hooks up to an air-pulse generator. It inflates and deflates to compress the chest up to 20 times a second. The vest rids Mark’s body of the life-threatening build up of infection-causing mucus.

Previously he had to undergo painful and time consuming manual chest percussion therapy. ‘Everything pretty much had to stop for the therapy,’ he said.

‘Before the vest it took lots of time every morning and night to do all the medications and treatments. This very quickly took its toll on me with having a full-time job and having to be exercising regularly as well.

‘Eventually things ended up getting skipped, whether it was breakfast, chest physiotherapy or exercising. Now with the vest it cuts down treatment time so I’m much more able to keep consistent with my regimen,’ he said.

Now instead of spending nearly six hours a day declogging his chest, Mark is able to sit down for three 20 minute sessions and can work or watch TV.

‘Apart from being very efficient at doing the job of conventional chest physiotherapy in a shorter time, the vest is also quite relaxing and gives a massaging effect,’ he commented.

CHILDHOOD AND BEYOND

Constant bouts of crying and an inability to thrive were the first tell-tale signs of the illness in Mark.

When the symptoms showed no signs of abating, his anxious parents took him from doctor to doctor both here and in Jamaica.

Physicians in Canada finally made the diagnosis. Relief at knowing what was wrong, however, was tempered later with the realisation that he would need constant medication and gruelling exercise regimes to clear the excessive mucus in his lungs.

Such secretions affect the pancreas, preventing the normal breakdown and digestion of food. Mucus can also damage the liver and block the bile duct.

During his teens Mark’s CF flare ups grew more frequent and pronounced and may have been linked to puberty.

As well as his inability to digest food properly, his lungs started getting congested. ‘I was hospitalised for periods of up to three weeks, a couple of times a year, from when I was 16 ears old,’ he recalls.

Weakened by continuous infections and endless rounds of antibiotics, the condition took its toll.

‘I was down to around 93lbs and my lung capacity was down to 23 per cent,’ he confides.

‘I had lost so much weight and my lung capacity was so poor that when I went back to Canada at 20 years old to be evaluated for a lung transfer, the doctors said I was too weak to undergo surgery.’

WAKE-UP CALL

This experience and the no-nonsense advice given during that visit were a wake-up call for the office assistant.

Mark came away determined to maintain his lung health by watching his diet and making himself his own expert in the illness.

Using the Internet as a resource tool helped him keep in touch with new clinical trials and the latest information about the disease.

It was whilst online at the Cystic Fibrosis Forum that he learnt more about the vest.

According to the product information ‘[The] process creates mini-coughs that dislodge mucus form the bronchial walls, increase … and move it along… Once the mucus has moved from the smaller to the larger airways, it can be removed by coughing or suctioning.’

Mark applauds the work of the Cayman Islands Cystic Fibrosis Trust in raising funds and awareness of the debilitating disease.

‘I would like to say a big thank you to the CICFT for providing the vest for me, and also to all the sponsors and supporters too as without them it wouldn’t have been possible,’ he said.

The Trust was set up last October and it wasn’t long after that Mark met with organiser and co-founder Pamela Fowler.

Having a local support group means he is able to share information about his personal experiences of CF here in Cayman.

‘For years I kept quiet about my illness and hated taking pills in public… Nowadays I realise that by being open about my CF it allows people to find out more about the illness,’ he said.

Trustees Jon Fowler and Christina Kirkaldy formally handed over the vest and generator to Mark last Wednesday.

The gift ties in with the Trust’s extended remit to raise funds locally to support global research for a cure for CF, and to hear from those with CF locally to help them if possible.

‘The Trust is delighted to have been able to assist with Mark’s immediate need for access to the latest physiotherapy technology in his ongoing and courageous battle with Cystic Fibrosis,’ said Mr. Fowler.

The Cayman Islands Cystic Fibrosis Trust raised nearly CI$60,000 last year, with approximately CI$37,000 coming from its annual Ball.

CF Symptoms

In the US, CF affects about 30,000 people, according to the Cystic Fibrosis Foundation.

The hereditary disease is passed on when both parents carry a specific recessive gene. When both parents are carriers, their offspring have a 25 per cent chance of getting the disease, a 50 per cent chance of being a carrier and a 25 per cent chance of being free of both.

According to the Cystic Fibrosis Foundation people with CF can have a number of symptoms, including:

? Very salty-tasting skin

? Persistent coughing, at times with phlegm

? frequent lung infections

? wheezing and shortness of breath

? poor growth/weight gain in spite of a good appetite

? greasy, bulky stools.

FYI

For more information about the Cayman Islands Cystic Fibrosis Trust call Pamela Fowler on 916-4312.

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