An Auckland man is slowly dying from a rare autoimmune disease that’s causing his skin to harden and his organs to solidify – effectively turning him to stone.
Callan Fabian is being slowly paralysed by the condition, destroying his ability to do everything he loves.
The 44-year-old has scleroderma, a disease that makes the body produce too much collagen, which attacks healthy organs causing them to be overtaken by scar tissue.
His movement has become restricted as the condition makes skin thick and tight. Ulcers have broken out on all of his joints and inside his mouth and he says it’s difficult and painful to speak.
The condition is progressively hardening his internal organs, causing permanent damage and slowly trapping Fabian in his own body.
In a sad irony, Fabian – who can no longer feed himself, is in severe pain and needs constant assistance – used to work as a stonemason.
His specialist has told him the disease will likely bring about an early death.
“I’m losing all of my movement and my ability to do everything,” Fabian said.
“I get sick very easily but I stay positive.”
Fabian was diagnosed with the condition more than a decade ago, however it has been sitting dormant for most of those years. It was only about three years ago that it took over his body.
Information on the Scleroderma New Zealand website says the disease affects an estimated 1000 Kiwis. Research is underway to establish what causes the disease and there is currently no known cure.
Now living in a Glen Eden retirement village, Fabian has no family in Auckland and few aquaintances. But a kind-hearted stranger has struck up a unique friendship, bringing light again to Fabian’s life.
“I had to keep it together before Ray,” Fabian told the Herald.
“He came along at just the right time when I was starting to get a whole lot worse.”
Ray Farrell stumbled across Fabian when he was visiting another member of the RSA in the North Shore Hospital. The 69-year-old is the RSA’s district support adviser for the Auckland region and keeps an eye on elderly or sick members.
He soon realised Fabian was on his own, so had him sign up to the RSA as an associate member. For the six months Fabian has been living in his retirement village Farrell has visited him daily.
“He had no one visiting him before as his mum didn’t have the funds to come and visit from Kaipara Heads very often,” Farrell said.
Farrell helps out by purchasing extra bits and bobs for his friend “like actual juice instead of that Raro stuff” and escorts him on trips outside the retirement village.
Tomorrow the pair are headed out to get Fabian a haircut and to visit Henderson Mall.
Farrell admits a portion of these purchases come from his own pocket, but says it isn’t a big deal.
“We have an understanding between us. No one is ripping anyone off, it’s all good.”
Before Scleroderma began to take over Fabian’s life he worked as a stonemason, “and a good one at that”, Fabian said.
He spent about 25 years living and working in Sydney before moving back to Auckland to work.
Fabian said his passion had been cycling – specifically road racing. He spent his earnings on carbon fibre bikes and said he had become “pretty good”.
“I had to have the fastest bike at the coffee shop to make the other guys jealous,” he said.
“I was a stonemason – what else was I going to do with my money?”
A Givealittle page has been set up by a scleroderma support group in Auckland to help fund Fabian’s care .
“Callan has a progressive condition and will not be recovering,” the Givealittle page says.
“In the period of just two years Callan has gone from a fit and strong young man working as a stonemason to living in the nursing wing of a rest home.”
Andrew Harrison, University of Otago associate professor of medicine, has treated many patients with scleroderma.
He said bad cases start out with the patient’s skin and fingers becoming inflamed, and as the swelling goes down the skin hardens like plastic, turning them rigid and making it impossible to grip.
Fibrosis often sets in in the lungs and kidneys, and it can also put strain on the heart as it becomes difficult to pump blood. Severe hypertension and gut problems are also possible.
Severe scleroderma “has a fairly awful mortality rate,” Harrison said. “Often the cause is unexpected – high blood pressure could lead to a stroke, or it could be an infection which is not uncommon because of the poor blood flow, and that can spread around the body.”
What is scleroderma?
- Scleroderma, or systemic sclerosis, is a chronic connective tissue disease
generally classified as one of the autoimmune rheumatic diseases.
- Those suffering from the condition might experience swelling or puffiness of the hands, joint stiffness, skin thickening, ulcers, dry or itchy skin and red spots appearing on the skin.
- In severe cases patients might experience thickening or hardening of internal organs as well as digestive problems like diarrhoea and difficulty swallowing.
- Scleroderma is not contagious, it is not infectious, it is not cancerous or malignant, and it is not usually hereditary.
- It is estimated that about 1000 people are affected by scleroderma in New Zealand. Scleroderma has been reported worldwide.
- Even though scleroderma has no cure, many of the symptoms can be improved with medication or lifestyle changes.
Source: Scleroderma New Zealand
Source: NZ Herald