Cork's ‘Stem cell boy’ hopes his treatment for MS will be life-changing

CORK born theatre producer, Damien Tracey, has been given a new lease of life thanks to a stem cell transplant which was deemed the best type of treatment for his Multiple Sclerosis (MS).

The 37-year-old, originally from Passage West and now based in London, started producing plays in Cork and then went to England to study at the Drama Studio. He now works for well known producer, Bill Kenwright.

Currently on leave from work, Damien first noticed symptoms of what turned out to be MS as early as 2009.

“I came back to Cork to do a show at the Cork Arts Theatre. I would lie down to do a warm up. Every time I lay down, the room started spinning. I got really tired but then that would pass. It happened a couple of times.”

In 2013, after he produced his first show in London, Damien experienced numbness. It started in his right foot and then began to spread. He went to A&E a few times. He was told that if it got worse, he was to return.

“On about the fourth trip, I said I had done a Dr Google and the symptoms were coming up as MS. I was checked and told by a doctor that he didn’t think it was MS but he referred me to a neurologist.

“The neurologist didn’t think it was MS either but he referred me for an MRI. That was just before Christmas in 2013. The diagnosis of MS came in January, 2014.”

Damien purposely didn’t read much about the condition.

“I didn’t want to know if I’d end up in a wheelchair,” he says.

He had a relapse when his whole lower body went numb. It was a struggle to walk.

Damien said his neurologist “jumped me through about five stages of MS and put me on one of the strongest drugs for it. That kept it at bay for three years. Then it stopped working.”

Damien was put on another drug which worked for only three months. At that stage, it was decided to give him a stem cell transplant. The hospital was St Georges in Tooting.

In layman’s terms, MS is a result of the immune system mistakenly attacking the layer that surrounds and protects the nerves. It’s called the Myelin sheet.

As Damien wrote in his blog (stemcellboy.com): “The idea behind a stem cell transplant (pioneered through cancer research) is that by stripping the body of its faulty immune system and transferring new blood forming stem cells into the bone marrow, it will grow back more intelligently and stop the body from attacking itself.”

Stem cell transplants have been available through the NHS in the UK for eight or nine years. Damien says that treating MS in this way has been deemed a ‘cure’.

“It’s not a cure but the results are really positive. It’s quite stringent to get a stem cell transplant on the NHS. Before it, my neurologist said I should try the drug Lemtrada because a stem cell transplant is very invasive and it was going to eat into my life. It could take away my immune system for anything up to a year and I would be susceptible to infection.”

For three months, Damien said the drug was great. But the numbness returned. He had three relapses and said to his medical team that Lemtrada clearly wasn’t working and there was nothing fighting against his MS. So the stem cell transplant was back on the agenda.

“The criteria for it is quite rigid. You have to have been on a high end drug such as Lemtrada. Once on the drug, you have to show disease activity in the brain.

“My MRIs were showing active lesions on my brain, despite being on the drug treatment. I had to go through a really rigorous MOT. My heart, lungs, and breathing were all looked at. Pretty much every area of the body is checked out.

“With a stem cell transplant, essentially, (the medics) destroy your immune system so you have no defences. They have to make sure there’s no infection before you have it. You have to inject yourself four times a day for five days. That quadruples the amount of stem cells in your body.”

Despite his ordeal, Damien is not without a sense of humour.

“It’s great. You’re able to empathise with your female friends. The pain is like early labour. On the third or fourth day, it starts to really hurt. On the fifth day, you go into hospital.”

Damien’s blood was taken out.

“The stem cells are then separated from the blood. The blood is put back in. Ten million stem cells are harvested and go off to a laboratory in Southampton, frozen. In hospital, I had an intravenous line fitted. I had seven sessions of chemotherapy. The aim is to wipe out the immune system as quickly as possible to destroy it.

“At a certain level, the immune system is gone. Then I was put in isolation. I couldn’t leave the room for two weeks. People could come in as long as they were healthy.”

The stem cells were later put back in, over the course of an hour. They were defrosted in a vat of water, put into a drip and into Damien’s body. “Then it’s just a waiting game until your immune system gets to a certain level.”

Damien was allowed go home after being in hospital for three months. He has only been out of hospital for four weeks. He was told he would be very tired.

“But I was surprised. I’ve been working with a physiotherapist doing lots of exercise. Your strength improves day by day but you have to be careful.

“I still can’t go on public transport for another week to make sure I’m not in an environment with lots of people, in case of infection. You’re left out of hospital when your immune system is at a certain level but it’s nowhere near capacity.

“There’s follow up at the hospital. The after care is really good. If there is any infection, they can catch it quite quickly.”

There are no guarantees. But on the plus side, Damien says that, “80% of people who’ve had a stem cell transplant have reported no MS symptoms up to five years after it. There’s a really good chance, fingers crossed.”

Damien has a certain amount of self care going on. He has a therapist because, mentally, the going is a little tough. Used to working hard in theatre, he finds talking to his therapist helps his state of mind now that he has time on his hands.

Damien’s boyfriend is very supportive. His parents came over to London for two weeks and visited him in hospital every day of their stay.

Damien said, the NHS “is the best thing about this country. From the moment I got diagnosed right up until now, the speed of the treatment is incredible.

“If you’re a billionaire or a pauper here, when you go to A&E, they ask you how they can help. In America, they ask you how much health insurance you have.”

While Damien’s life has revolved around medicine in the last while, and keeping himself well, he couldn’t turn down an invitation to go and see the musical show, Dear Evan Hansen, when it opened in London, a week after he came out of hospital.

“It was the hottest press night in London, so I went to it but I stayed in bed all day before going out and I came straight home after the show.”

Here’s hoping Damien will continue to thrive.

You can follow his journey on www.stemcellboy.com