Every day, we hear from MedicAlert subscribers of all ages and walks of life about their MedicAlert stories. We'd like to share a few.
While he can pronounce and spell it with ease today, pseudocholinesterase deficiency was a mouthful for Alex, just seven years old when he learned he had the rare genetic disorder. In his twenties, Alex’s father, who has the same condition, had routine wisdom teeth surgery and needed to be intubated when the general anesthesia he was given could not be broken down and he did not wake up when he was supposed to.
Pseudocholinesterase deficiency is a condition that results in increased sensitivity to certain muscle relaxant drugs used during general anesthesia, called choline esters. The drugs are often used for brief surgical procedures or in emergencies when a breathing tube must be inserted quickly. Normally these drugs are broken down by the body within a few minutes of being administered. However, people with pseudocholinesterase deficiency are not able to break these drugs down easily, and often must be supported with a machine to help them breathe. Sometimes they do not recover.
Alex, an active kid with a passion for hockey, had a MedicAlert ID. But like many teens will do, he stopped wearing his bracelet. “Big mistake,” says Alex.
At the age of 17 following several shoulder dislocations caused by playing goalie in hockey (and too many trips to the hospital to reset it), Alex required shoulder surgery at his local hospital. Despite his condition being registered in his chart, a busy anesthesiologist missed it. His mother, a nurse who knew all too well the dangers of certain anesthesia drugs for her son, inquired about what general anesthesia Alex would receive for his surgery. The surgeon said succinylcholine – the very drug Alex could not metabolize. That’s when she pulled out Alex’s MedicAlert wallet card.
“I was too out of it at the time to be able to tell the doctor about my condition,” he says. “If my mother hadn’t been there to ask if they had seen my MedicAlert wallet card, things would have been very different for me. But I really should have been wearing the ID.”
While the bracelet went back on periodically after the shoulder surgery incident, it wasn’t until Alex was in his early 20s that it went back on his wrist permanently.
“There are just certain moments in life that resonate,” he says. “My father had triple bypass surgery just as I started my Chartered Accountant (legacy) designation. I had my whole life in front of me, and he nearly lost his. It just put things into perspective for me.”
Ask Alex and he’ll tell you, “life is precious and far too short. I’ve learned that the hard way, losing family and friends over the years. Given my condition, having MedicAlert as part of my tool kit for good health is the smartest thing I can do to stay safe.”
Today, Alex is the father of two rambunctious kids, one of whom has inherited pseudocholinesterase deficiency. Next up on the list of things he needs to take care of – a MedicAlert ID for his son.
“Back in Nigeria, I wouldn’t have this type of support. It’s comforting to know I have access to a MedicAlert subscription thanks to caring MedicAlert donors.
Uche is a new immigrant to Canada. Bravely, he struck out on his own to start a brand new life in Calgary, Alberta in 2018.
“I moved to Canada as there are greater opportunities here, and I wanted to provide a better life for my family. In Nigeria I worked in the mechanical engineering industry, and I also started an education organization aimed to teach children coding to improve their skills. Since moving to Canada I’ve worked as a Warehouse Worker and then moved into a Mechanical Technician role. I love making things and playing around with different technology.”
Things were looking up for Uche, and then the global pandemic hit in March 2019, resulting in his job loss and loss of the community he had built through his work colleagues.
“I live alone. My family isn’t able to move to Canada yet, and I’m separated from them by continents, time zones, and thousands of kilometers. It has been very challenging to meet people as a new immigrant, understand the Canadian culture, and now with COVID-19, it’s become even harder. I’m so alone.”
Living in insolation and not having a support network close by, has taken a significant toll on Uche’s mental health.
“Last year, I was getting really depressed. I felt irritable and would have waves of frustration, sadness and anger because the pandemic caused me to lose my job and has made it even harder to apply for Permanent Residency. It’s been difficult to socialize and meet people during the pandemic. I just want to hang out with my friends and be with my family. On top of that, I started feeling sick and was having some allergic reactions to food and aspirin.”
After visiting his family doctor, Uche was diagnosed with a glucose-6-phosphate dehydrogenase (G6PD) deficiency - an inherited condition where the body doesn’t have enough of the G6PD enzyme which helps red blood cells work correctly. A lack of this enzyme can cause hemolytic anemia, and in severe cases, it can even lead to kidney failure or death.
“Receiving that diagnosis was scary. I’m fortunate to have a supportive family doctor who recommended I wear a MedicAlert ID in case I had an allergic reaction or a medical emergency due to G6PD. There was just one issue – I was worried I wouldn’t be able to make payments due to my financial situation.”
After assessing Uche’s situation, he was provided support through MedicAlert’s Inclusion, Diversity and Equity in Action Program.
"Having MedicAlert as my safe-keeper is such a relief. God forbid if anything should happen, I know I'll be protected by MedicAlert in an emergency crisis."
Sometimes, things are not as they appear. This is certainly true for Loki, one of the first people to benefit from MedicAlert’s Inclusion, Diversity and Equity in Action Program – the IDEA Program – that helps individuals who may find it more challenging to access health care services for a host of reasons.
Loki, who identifies as transgender, was born with congenital scoliosis, a sideways curvature of the spine. It occurs in only 1 in 10,000 newborns and is much less common than the type of scoliosis that begins in adolescence. Most children are diagnosed at birth. For Loki, their condition was not diagnosed until they were eight years old. What went undetected at birth caused a cascade of health challenges for them.
The following year, Loki was diagnosed with post-traumatic tethered spinal cord syndrome. In post-traumatic tethered spinal cord syndrome, scar tissue forms and tethers or holds the spinal cord to the soft tissue covering which surrounds it. This scar tissue prevents the normal flow of spinal fluid and impedes the normal motion of the spinal cord. In the end, what Loki was facing at the age of nine was a health challenge most of us can’t even imagine. Their condition meant a progressive deterioration of their spinal cord which causes immense pain. There is no cure, and to manage the pain, patients are often prescribed opioids. But for Loki, this pain management tool was not an option. They are allergic to the medication.
Against incredible odds, Loki persevered through high school and college to become a Computer Aided Design (CAD) Technician – a career they loved. But slowly, over time, their condition worsened to the point where they could no longer work. Today, the 34-year-old British Columbia native lives on a disability pension but is grateful to be surrounded by family and friends who support them in working through the challenges that come with everyday life.
MedicAlert is there to help, too.
“Before I had a MedicAlert ID, I was living with constant anxiety,” says Loki. “I was worried about what could happen every time I left the house. What if I got into an accident? Most first responders wouldn’t know that I live with a spinal cord injury, have a catheter, or have life-threating allergies to opioids. MedicAlert doesn’t just provide peace-of-mind, it also provides personal safety. You never know when you’ll need it. The speed of information is so critical.”
But it’s not just Loki’s complex set of health conditions that need to be understood by first responders. More recently, they have undergone gender reassignment surgery.
“My MedicAlert health profile states that I am transgender. It’s a critically important fact for medical professionals to know. My surgery scars can be confusing for someone who does not know my medical history. It is possible that they might assume that I’ve had heart surgery in the past. I’m also unable to have a traditional catheter insertion because my anatomy is different than what someone might assume just by looking at me. It’s the extra information on my profile that will help medical professionals make the most informed decision if I’m ever in a serious medical emergency.”
Many disabled, elderly, or low-income individuals live with a chronic illness or a life-threatening condition. Without a recognized medical ID these people could be at risk in the event of a medical emergency. MedicAlert’s IDEA Program, funded through the generosity of our donor community, is designed specifically to meet the health emergency needs of these individuals.
For Loki, not having to choose between making rent payments or protecting their health is a significant weight of their shoulders.
“I love that I have the physical MedicAlert ID on me – I feel the protection. The added feature of the 24/7 Emergency Service Lifeline makes me feel secure. Should an incident arise, I know I’ll have a lifeline to help me.”
Loki is one of hundreds of people who turn to MedicAlert for help each year.
Have you ever wondered as you were going to bed if you would wake up the next morning? It’s not a question most of us ponder as we turn out the light, but for 48-year-old Travis, it’s a very real question based on an experience he had more than 20 years ago.
Travis lives with type 1 diabetes. Diagnosed at the age of 15 following a winter where he describes himself as not being well, Travis experienced the “usual” signs of diabetes such as excessive thirst and unexplained weight loss. It was a pivotal moment during which Travis learned to manage his illness during a seven-day stay in hospital that helped him get his blood sugar under control.
The native Newfoundlander, now a resident of Guelph, Ontario, recalls the dramatic change that happened in his life – which included his introduction to MedicAlert.
“There were doctors and nurses and dieticians who instilled in me the importance of managing my disease,” he says. “One dietician reminded me that it wasn’t about denying myself the sweets that I enjoy, it was about everything in moderation. I also learned the importance of having back-up in case I had an incident where I had a low, as I call it, and I wasn’t able to speak for myself.”
Despite Travis’ solid record of taking care of himself over the last 30 years by watching his diet and managing his A1C levels (a critical measurement of blood sugar levels), there have been a couple of times where things went off the rails. He recalls a trip back home to Cornerbrook when he was in his early 20s. He and his friends were staying at his grandparents house when one morning he simply did not wake up. His friends were panicked and called an ambulance. Paramedics were able to stabilize him, but it was a warning sign. He was also not wearing his MedicAlert ID at the time.
“There was a time when I thought I was too cool to be wearing a MedicAlert ID. I thought it was for older people. If my friends hadn’t been there, I’m not sure what would have happened. I may not like the ID, but I do now wear it. I realize it may not be part of my fashion sense, but it is an important part of my medical safety net.”
The second time Travis needed help was when his mother cut her hand badly while making dinner. They called an ambulance, and Travis followed in his car. Focused on his mom, he’d forgotten all about eating. As he drove back home he could feel his low coming on. He though all he needed to do was to be able to get some juice into himself, but it was too late. He could not manage that task. His mom called from the hospital to tell him she was going to be fine. Travis was barely able to answer the phone. She realized what was happening and asked the ambulance driver to go back and get her son.
“I guess that’s one of the benefits of living in a small city,” Travis jokes. But he realizes that he was on the verge of a diabetic coma, and while he remained conscious, his memory of the event is hazy.
Today, Travis’ safety net is much broader than it used to be. “I am a private person. I don’t like to ask for help. I realize that it’s important for people around me to know about my diabetes in case anything happens, and when I’m not with anyone else, my MedicAlert ID can speak for me.”
He’s also aware that his two children can also be a part of his safety net. “When they were younger, I didn’t feel the need to share much about my diabetes. Now that they’re older and with me 50 per cent of the time, the knowledge I share with them could be a game changer for me if I end up in trouble. Telling them that MedicAlert is there to help support them as well is an important part of that message. You never know when you just might not wake up in the morning.”
It’s a busy day in Kyrie Herman’s household. Emotions are high as her husband Adam is working remotely while living with chronic pain, and their children Cadence, 14 and Holden, 11 are schooling remotely as they have recently tested positive for COVID-19.
Kyrie coughs into the phone receiver. “We’re currently isolating as both children have contracted COVID-19, and now I’m starting to develop COVID-19 symptoms and will need to get a test this afternoon.”
It’s especially hard for Kyrie and Cadence as they both live with a connective tissue disorder known as Ehlers-Danlos syndrome. The disorder affects the skin, joints and the blood vessel walls in the body.
“The severity of Ehlers-Danlos varies”, Kyrie says. “For myself I have severe muscle weakness from this disease which has impacted my vocal-chords making them very weak. At the best of times, I have difficulty breathing to the point where I’m literally gasping for air.”
Ehlers-Danlos is associated with a variety of genetic causes, some of which are inherited and passed on from parent to child. The most common form, hypermobile Ehlers-Danlos syndrome, means there’s a 50% chance of passing the gene on, which is exactly what happened to Kyrie and Cadence.
“I’ve lived with this syndrome for most of my life, and it’s heartbreaking to learn that your daughter has also inherited this debilitating disease. This is something that no parent wants for their children. You dream of them living a healthy and carefree life – Cadence is battling with this syndrome at the same severity I am and she’s 25 years younger than I am.”
Overwhelmed with grief and struggling to make sense of how to best manage and care for their family, Kyrie and Adam searched online to find resources to help them.
“I first learnt about the No Child Without Program after signing myself up to MedicAlert 4 years ago. I’ve had too many close calls where I was unable to speak and as severity of Cadence’s health ailments progressed, I knew that it was only a matter of time before she too could be at risk.”
Cadence also lives with a variety of allergies and has an extreme reaction to the cold.
“Living in northern Alberta where the temperature can get to -30C, means we’re on high-alert. She can’t go outside most of the year and it’s become so bad that even frozen popsicles can affect her body and she’ll faint.”
Most recently, Cadence was at the local community pool when she had an allergic reaction due to the cold temperature of the pool. Not only did she faint, but she fainted in one of the most dangerous ways a person can – in the water.
The emotion cracks in Kyrie’s voice as she relives the day.
“How do you even begin to process hearing that your daughter has fainted while in a pool, without her family close by who knows everything about her health conditions? She’s 14 years old and needs her own independence, but how can I make sure she’s going to be ok when I’m not there?”
Fortunately, Kyrie had signed Cadence up to MedicAlert’s No Child Without Program a year before the pool fainting incident.
“Knowing that she was wearing her MedicAlert ID certainly gave me a lot of relief. I’m so grateful her friends were close by to help, but they’re not all experienced in knowing what the tell-tale signs are. It’s a huge risk and I could never forgive myself if anything happened. I’m her mother and I’m going to do everything I can to give her the best opportunity and care in this life.”
The No Child Without Program gives children across Canada access to a MedicAlert ID – free of charge. It’s this program that was able to help Cadence when she needed it the most, but more children who are living with severe health conditions need it too.
“It breaks my heart to think of a parent who is unable to afford a MedicAlert ID for their sick child. I’m grateful Cadence is a recipient of the program and as her MedicAlert ID gives me peace of mind whenever she’s away from home.” I just hope more families like mine can get access to have the same relief I have.”
Look past the purple hair, the peacocks and the pigs in her backyard farm as she calls it, and you will find a respected Canadian military veteran who wears her MedicAlert ID as proudly as she wears any service medal.
Her name is Sarah.
Sarah first became a MedicAlert subscriber nearly 20 years ago. Then, in 2006, as Sarah was in the midst of pre-deployment training, when she had an horrific accident. Wearing full military gear – an extra 80 lbs added to her relatively small frame -- she jumped off the back of a truck. As she landed, she crushed her spine and her hips. In an instant, her military career was over, but her journey to recovery was just beginning.
After multiple surgeries, gains and setbacks, Sarah was ultimately diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of dysautonomia — a disorder of the autonomic nervous system typically cause by trauma. This branch of the nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating and body temperature. The key characteristics of POTS are the specific symptoms and the exaggerated increase in heart rate when standing. Sarah can collapse at any time and is at greater risk of a heart attack or stroke.
POTS can be life-changing. It certainly was for Sarah. A single mom with a young son on the autism spectrum, Sarah faced more than health challenges. She faced a battery of worries. One of the biggest risks for people with POTS is falls due to fainting. Sarah was concerned about this because she wasn’t sure who would be her voice if she happened to fall and hurt herself and was unable to speak.
It was Apollo, her 125 pound German Sheppard service dog, and MedicAlert to the rescue.
“I had a choice after my accident,” says Sarah. “I could be bitter, or I could be better. I chose better.”
Sarah likes to call herself a walking billboard. “I have my MedicAlert ID on my wrist at all times. I never take it off even in the shower where I am actually at a higher risk of collapsing since higher temperatures affect my condition. I also made a pouch for Apollo that he wears all the time. It says, ‘my owner’s MedicAlert information is inside’ and that’s where I put my wallet card that has all of the details of my health conditions. I even had a dog tag made for Apollo that says that I am a MedicAlert subscriber. There is no way any first responder can miss this information! It’s helped me on so many occasions.”
Sarah’s passion for MedicAlert and the peace-of-mind it gives to her has spilled over into other areas of her life. She teaches first aid and ensures that all her students are aware of MedicAlert and the need to look for a MedicAlert ID when they are checking someone’s pulse.
She also is an active volunteer in her community of Kemptville, about 30 minutes south of Ottawa and has made MedicAlert part of her initiatives.
“I give suitcases to Children’s Aid for kids moving into foster care,” she says. “They suitcases give the kids a bit more dignity than the garbage bags that they usually use to take their belongings to their new homes. I fill the suitcases with little comforts like colouring books or teddy bears, and the necessities like toothbrushes, toothpaste, towels and, of course, MedicAlert.”
Sarah’s even working with a friend to build something called the Invisible Injuries and Illness Initiative (Four Is for short). “To look at me, or other people with illnesses you can’t see, it’s hard for people to really understand the challenges we overcome on a daily basis. A lot of time people don’t believe you, and they treat you differently. By helping spread awareness, my hope is to help create more empathy for people with invisible conditions. MedicAlert is one of the tools that helps us in this work.”
For Sarah, having MedicAlert is a “no-brainer.” She notes that people who have health conditions can’t afford to live with “what ifs.”
“I’m not sure if people truly understand how affordable it is. When it comes to your health and well-being $5 a month is certainly worth it.”
And for those who truly can’t afford it, Sarah’s philosophy is to pay it forward. “Every time I call to update my health information or renew my service, I donate so that someone else can have the benefit of MedicAlert. You will not find a subscriber that would not say it hasn’t saved their life at some point. So, I think everyone should be able to have it.”
“Did you find her!?... They’ve been searching for her for like…I’m sorry. I’m sorry. I’m falling apart here…Thank you. Thank you.”
After 17 hours of not knowing where her mother was, the relief in Tracy’s voice is palpable. Nearly three years later, listening back to the phone call that changed her life, Tracy still gets emotional.
“I actually can’t believe how coherent I was,” she says from her Toronto home.
The 55-year-old former marketing executive had never heard the MedicAlert 24/7 Hotline phone call between herself, the MedicAlert emergency response agent, and Frank, the good Samaritan who found her 71-year-old mother, Jean, struggling to walk across a bridge more than 20km from home in June 2020. “At that point I hadn’t slept at all. The police had been out looking for hours. We had been searching. Things were getting closer to the time where… well, you just don’t want to think about what could have happened.”
Sadly, Tracy’s story is not unique. Every year, thousands of people living with Alzheimer’s or other dementias will wander. Some are found with serious injuries or health impacts from other conditions they may have. Some never make it home again. These are the outcomes families fear the most.
Yet new research conducted by the University of Waterloo School of Public Health, shows that for those who have MedicAlert’s Safe & Found service, 91% individuals are returned to the care of loved ones unharmed and without significant signs of health trauma. What’s more, in 46% of wandering incidents involving MedicAlert, people are found by good Samaritans.
“That statistic speaks to the community’s recognition of the best-known component of MedicAlert’s services,” notes Dr. Stefanie Tan, MedicAlert’s Associate Vice President of Research, Innovation and Programs. “Our body-worn jewelry is instantly recognizable. People automatically know what to do when they see someone in distress who wears one of our IDs. And because our live operators have access to a complete health record, if someone is exhibiting other signs of trauma, they can relay information that can have a positive impact on the person’s health outcome.”
In the case of Tracy’s mother, who also lives with diabetes and a heart condition, it was important that she be rehydrated quickly. “The only thing she left the house with was her keys. It was hotter than Hades, and at this point in her disease progression she had started to forget to eat, so I’m sure she’d had nothing to eat or drink. If it had gone much longer, I’d hate to think what might have happened.”
Jean’s wandering incident came without much warning. “My mother was always so prepared for everything,” Tracy says of the former Superintendent of a women’s correctional facility just west of Toronto. “But when she was diagnosed in 2018, we thought we’d better be safe than sorry, so I put GPS tracking on her phone. One day I had called to see if she was home, so I could drop off some meals to her. She said she was downtown shopping but was on her way home. I looked at the tracker and I literally watched her going in circles on the subway line. She kept missing her stop. So I told her to stay put and I went to get her.”
Tracy never thought of the subway incident as wandering. She also never thought her mother would go missing for 17 hours just a few weeks later, or how much the ordeal would impact her life.
“I was so grateful to Frank and his daughter for their kindness and generosity – for taking the time to stop and help my mother. The police were amazing, too. They had so little to work with because my mom didn’t have a history of wandering, but they kept touching base and stopping by the house reassuring us that patrol cars were on the lookout for her.”
While Jean was returned home safe and unharmed, the worry didn’t stop for Tracy. “Honestly in the next few days I got really scared. What if it happened again? I thought the GPS phone tracker was there to help me find her. But that only works if she has her phone.”
That’s where Tracy is so grateful for MedicAlert. “She wore her blue Safe & Found necklace all the time,” she says, “and we’d attached her bracelet to her keys when she started to become agitated by the feel of it around her wrist. Having two MedicAlert IDs was one of our best decisions.”
After the wandering incident, Tracy’s life took a major turn. “My mom was never alone after that. We took turns sleeping on the couch at her apartment. We hired a personal companion to come in a couple of hours each day, so we could get some respite, and we did get some nursing support.”
Eventually, Tracy and her husband took the significant step of moving to a new home where they could bring her mother to live with them full time. “I am grateful that we had the means to do all of this to support my mother. I can’t imagine what it is like for other families who don’t have the resources we do. But the best investment we made was the least expensive, and that was MedicAlert.”
While there is still no cure for Alzheimer’s and other dementias, MedicAlert’s research, which examined hundreds of thousands of datapoints from the MedicAlert Subscriber Health Information Database, is showing promise for new interventional safety solutions that could give families like Tracy’s a new set of tools in their toolkits to keep loved ones safe.
“We’re hopeful our ongoing work with Dr. Lili Liu and her team at the University of Waterloo will yield some exciting breakthroughs in personal safety in the very near future,” says Dr. Tan.
That’s welcome news to Tracy. “I already give MedicAlert a 10 out of 10 for being the service that helped us to find my mom. The worst thing for families is having no idea when to expect a wandering incident, but if there is research that could lead to some kind of tool or tools that would help people to have visibility into when a family member might wander, that would be incredible and would ease a great deal of stress.”
Today, Jean lives in a long-term care home. Her disease has progressed rapidly and is at the point where she will likely lose her mobility soon. But Tracy is grateful for the days where her mom is more lucid and they can have conversations about family, the weather and her mom’s favourite pastime, Scottish dancing.
If you would like to learn more about MedicAlert’s Safe & Found Program or you would like to support further research work, visit us at www.medicalert.ca/safeandfound.