(Advisory: This Story Discusses Aortic Dissection)
Throwing Caution to the Wind
Moving to Malaysia at 23 years old was something Joe Staniforth of the United Kingdom — now 39 years old — never had a second thought about trying. Beyond living with Loeys-Dietz, he was excited by the idea of getting out and experiencing something.
“As soon as I had the first taste of warm humid…Malaysia air, and of travel, I’ve made a point in my engineering career for more of it,” said Joe. “It’s been an endless pursuit of travel and experiences since my early 20’s.”
Joe was offered a job working in engineering in the city of Johor Bahru, Malaysia. While he had no reservations for the move, his parents were slightly more cautious.
“I spoke to my parents, and they were like, ‘Oh my god, what is the medical care like? How are you going to get your INR and MRIs done?” he smiled. “I will figure it out, hospitals are everywhere, its fine.”
“I moved out without a care in the world, as only someone in their early 20s without the experience of life can,” Joe said. The excitement he felt at that stage of his life, being in a new place, experiencing a new culture, enjoying new moments had a profound impact on him. Novel ideas fascinated Joe and opened up the world to him. “It was just endlessly exciting, and that excitement at the age of 23 changes something in your brain,” he said.
Upon arriving, he found that he could in fact get his medical monitoring done within the city, but doing so came along with a few extra steps.
“I could get my INR done in the city, but MRIs meant a trip into another country, Singapore” he said.
Joe traveled back and forth from Malaysia and Singapore during these years to get medical care, relishing the excitement and energy of it all, as well as travelling across Asia. But sometimes, his LDS did impact the activities he could safely enjoy.
“I went wake boarding, that you shouldn’t really do,” said Joe. “I obviously like twisted all the ligaments in my knee and bled into my knee. I did however find myself in Thailand the next weekend with a heavily strapped knee.”
Being away from his home team of expert providers did prove challenging in that circumstance, but Joe continued to persevere.
“I don’t know why I never gave up really. It just wasn’t in my DNA,” said Joe.
From Hiding a Diagnosis to Becoming Comfortable with Himself
Joe was initially diagnosed with Marfan syndrome at eight years of age in the UK, where he was born and raised. A general practitioner heard a murmur in his heart – minor, but still present. Coupled with persistent rolling joints, the initial diagnosis of suspected Marfan was made.
“It wasn’t until my early 30’s where I actually confirmed I had Loeys-Dietz type 1,” he said. “I have been historically very guarded about it. I never wanted anyone to think I couldn’t do things, and I refused to accept anything was different for me.”
Throughout his early life, Joe kept his health a secret from his friends, explaining that he never wanted them to hesitate in asking him to try new things together. “It’s probably why I broke loads of bones and ended up in the hospital, and a load of other stupid things,” he joked.
Joe even kept surgery to correct an enlarged aorta a secret during his college years.
“We sort of watched my aorta grow, then at about 17 or 18 maybe, they were like this is going to end in surgery,” he said. “Which I’m not sure I took particularly well as a hormonal 17-year-old.”
The surgery was suggested for age 19, when Joe would be away at university. He remembers the year well: it was the year Liverpool won the Champions League, 2005. Joe had surgery the very next day.
“I had my aorta and mitral valve replaced,” said Joe. “Two months later, I made it back for the start of university as if nothing had happened.”
Within the last five years, Joe has started to talk about his journey with Loeys-Dietz.
“I became more comfortable with myself,” said Joe. “I sort of stopped fearing that people wouldn’t let me do things.”
Love and Risk: The Person that Redefined Their Meanings
While Joe described his younger self as someone who “threw caution to the wind,” a loving relationship would temper his free-spiritedness with a new sense of circumspection.
“We met when we were 24, or 25 I think,” said Joe, of his wife Heather. “I’m more concerned for Heather than myself, and she’s probably more concerned for me than herself. So that’s a nice, sort of symbiotic relationship.”
Joe described realizing he was not just taking care of himself for himself, but also to be as healthy as possible for Heather’s peace of mind.
“You’re invincible when you’re young, even if you’ve been through open heart surgery, you’re invincible,” he said. “You grow up and start to feel the knocks and the breaks and the cuts a little more as you get older. When you got someone else you love that you need to protect, it starts to become more real.”
Loving Heather gave Joe the desire not just to enjoy adventure, but also to preserve the life they were building together. The love for travel they both had, and the experiences they would share together, made unnecessary risk-taking less appealing.
Together, Heather and Joe work to live life to the fullest in energizing, yet reasonably careful, ways. Having both left their respective jobs, after what started as a conversation in the pub, they bought a car — which Joe converted to include a place to sleep in the back — and set off on a journey back to Singapore, this time by land, travelling through 33 countries over a year.
‘It started as a joke, as an idea, wouldn’t that be fun. Then it escalated. I am not one to drop a good idea, so we did some planning and some saving, and then before you really realize it, you are pulling out of your driveway in England, headed for Singapore, thousands of miles ahead of you. Endless adventure,’ said Joe.
An Aortic Dissection and a Continued Passion for Adventure
At age 36, “We were monitoring the rest of my aorta, and they were like, ‘Oh, it’s grown a little bit, but we’ll just keep an eye on it,’” said Joe. “They told me not to worry about it.”
A week later, Joe experienced an aortic dissection in his kitchen. Joe underwent a 12-hour surgery, one that would leave him in a temporary coma. Once he awoke, he pushed through 30 days of intensive care, recovering from a punctured lung and fluid around his heart.
Joe reflected on this surgery ‘It certainly wasn’t as easy this time round, age makes it all hurt a bit more. But you get out of the hospital bed to walk with the physio, one foot in front of the other. As long as I got further than the day before, even by just a single step, I had won. You just repeat that,” said Joe.
Not one to be held back, just months later Joe and Heather moved to Singapore again, and now a few years later, Joe finds himself grateful to still be pursuing what he loves: travelling with his wife.
“I’ve done a lot of stupid things,” he joked. “But the continuous desire to see the rest of the world and interact with it…I could not sing the praises of travel highly enough.”
For media inquiries, please contact brandcomms@marfan.org
To learn more about Loeys-Dietz Syndrome, visit loeysdietz.org. For non-urgent medical questions, visit loeysdietz.org/ask. March is Loeys-Dietz Awareness Month. Learn more.
Christopher T. "Chris" Theriot is the Integrated Marketing Communications Manager for the Marfan Foundation and its divisions. Reach Chris at brandcomms@marfan.org