‘I died and came back’
HE is known for his association with road races and his physically active lifestyle, but when Alfred “Frano” Francis’s body shut itself down in November 2013, all he could do was watch.
The race director for Running Events Limited developed a condition known as Guillain-Barré syndrome, which left him temporarily paralysed. Francis told the Jamaica Observer that watching his body shut down was “unbelievable”.
“My own antibodies attacked my peripheral nervous system and it led to total paralysis,” Francis recounted. “I mean, my whole body shut down — my arms, my legs, my lungs. I was in intensive care and support for a couple days.”
He said his paralysis started with one arm and the other followed. Before long, his feet also stopped moving. Francis said his lungs were his last organs to go.
“I saw myself just like in the hands of God, in the middle, lying down there, and I said ‘boy, you know, it’s up to Him really’,” Francis shared. “And He has been good to me and He recognised that I still have work to do.”
Consultant neurologist at the University Hospital of the West Indies Dr Francene Gayle, who was also Frano’s physician, told Your Health Your Wealth that Guillain-Barré syndrome, commonly called GBS, “is an immune-mediated attack of the lining, usually, of the peripheral nerve within the body and that lining is made out of myelin. But on other occasions, it can be an attack on the central component of the nerve, which is called the axon,” Dr Gayle explained.
There are several causes, but she said the most common cause of GBS is post- viral illness.
“So, for example, influenza can bring on a Guillain-Barré syndrome; a particular bacteria that’s called campylobacter jejuni, they call it C jejuni for short, can also do it,” the consultant neurologist stated. “And patients usually have a history of a diarrhoeal illness for about three to four weeks prior to the onset of the GBS; also vaccines can do it,” Dr Gayle continued.
“There are various vaccines, for example the influenza vaccine, that can, in less than one per cent of cases, precipitate Guillain-Barré syndrome,” she held, adding that within the Jamaican context the chikungunya virus is also associated with GBS.
Whether CHIKV-related or not, she told Your Health Your Wealth that patients with GBS usually present with “weakness, which begins in the distal aspects of their limbs, their arms and legs, which progresses up over a period of days to two to four weeks”.
“And this results in weakness in all four limbs, so it can affect their motor functions, and then additionally it can affect their respiratory function, as well as their laryngeal functions so they have difficulty breathing, difficulty swallowing,” Dr Gayle explained.
The consultant neurologist said plasmapheresis and intravenous immunoglobulin – both available in Jamaica – are the two modalities used to treat Guillain-Barré syndrome. Dr Gayle however disclosed that both are very costly, approximating that plasmapheresis can cost in excess of $500,000 while intravenous immunoglobulin can, in some cases, cost in excess of $1 million.
“The first one is intravenous immunoglobulin, which in essence is antibodies that are infused into the patient’s body, and they actually mop up antibodies that are damaging the peripheral nerves,” she noted. “So that is an infusion that is given over two days or five days.”
With plasmapheresis, which Dr Gayle likened to a dialysis machine, she said that, in one sitting, patients can remove 75 to 80 per cent of the antibodies that are involved in the attack on the peripheral nerves, so they can respond with just one session.
“What it is, is that the patient is hooked up to a machine which extracts their blood and they separate the liquid parts of the blood from the solid parts of the blood,” Dr Gayle told the Your Health Your Wealth. “The solid parts of the blood are the red blood cells; the liquid part would have the antibodies that are damaging the peripheral nerves.
“So then what happens is that those antibodies are then discarded with the patient’s plasma – that’s the liquid part – and fresh plasma is actually infused in and added to the person’s red blood cells and returned to the body,” she said.
“So the plasma that’s added would be devoid of the dangerous antibodies that are damaging the nerves,” Dr Gayle reasoned.
The consultant neurologist insisted that both forms of treatment diminish or halt the attack on the peripheral nerves and that the nerve is allowed to regenerate the covering or the myelin over time. She explained, though, that availability of blood supply and technical/clinical support could determine which method is used.
Francis said that he was originally to be treated through plasmapheresis, but disclosed that because of issues with the machine, his treatment modality was changed.
“They gave me another medication that neutralised those cells and then added the good cells, now building back the peripheral nervous system,” he told the Your Health Your Wealth. “It is like having a wire between your brain and all your muscles, so when I move my hand, it moves, but remember your lung is an involuntary muscle… so when it’s interrupted, it shuts down all your movements.
“So they had to put something through my mouth, which was pumping the air,” Francis continued. “Definitely, I died and came back.”
He said that after the drugs did its work and he “came back”, he had to relearn everything. So he did six months of physiotherapy and occupational therapy.
“I think I am back now, I am running. This morning (January 5) I ran six miles. It is good. And I am going to run a half marathon on the 25th,” a happy Francis told the Your Health Your Wealth.
He opined that a patient’s age influences how quickly they recover, and offered that in his case, because he has always been physically active, that influenced how well he recovered.
“You have persons who take a year to walk, two years to walk, and some persons who never walk again,” said a reflective Francis.
Quizzed as to whether every patient with GBS recovers fully, Dr Gayle replied: “No, which is why patient education is so important.”
The consultant neurologist insisted that timing is a major factor in determining whether patients recover or not.
“Patients who present within the first two weeks of the onset of the symptoms and actually receive either of those treatment modalities are at the highest likelihood of recovering without significant deficits,” Dr Gayle declared.
Having experienced GBS, and watched helplessly as he lost his ability to control his movements, Francis said he has got a view of the health sector from the inside and is now more committed to his efforts of managing road race events in aid of charitable causes such as generating funds for purchasing hospital equipment.
Francis will be running in the Miami Tropical half marathon on January 25 as his recovery goal. He said that members of his Jamdammers Running Club and other clubs will also be running with him in support of his recovery goal.