How has primary immunodeficiency impacted your daily life?
From the time I was born until recent times, I had no knowledge that I had PID and had a limited understanding of viruses and infections, causing me to self-medicate using traditional home remedies and over-the-counter medications to attend school, hold down a job as the medical professionals had insufficient knowledge and often withheld antibiotics labelling me as a hypochondriac as my symptoms did not align with the typical criteria for such treatments.
What’s one misconception about primary immunodeficiencies that you wish more people understood?
There’s an old Native American saying, “Before you judge a man, walk a mile in his shoes.” This wisdom captures a crucial point: unless people immerse themselves in the experiences of someone with (PID), they may not fully grasp the effects their actions or inaction can have on someone with limited immunity against infections and viruses. During the Covid-19 pandemic, a well-meaning friend who was aware of my condition once remarked that it was just a mild flu for a few days.
In one sentence, can you tell us one thing you’ve achieved this year that you are proud of?
This year, I began to advocate for myself as well as the Immunodeficiency Community by volunteering as a provincial host for ImmUnity Canada’s Community Connect program, raising funds, and participating in the Education & Awareness Day event in Ontario, including a Walk on October 26, 2024.
If you could share one message with the world about living with primary immunodeficiency, what would it be?
Your support is needed for those within our community with PID or whose family members suffer from it. Be open to understanding PID and how your actions can impact their health and well-being.
Please take as much space as you would like to tell us about your experiences.
I was born to a young mother and a father who served in the Royal Canadian Air Force during a time when the world was still healing from the aftermath of WWII. My mother, whom I will refer to as Thelma, faced a significant loss when her mother passed away from cancer at the age of 46, just a year after the war came to an end. At 15, Thelma was forced to leave school to care for her younger sister.
Canada’s Ontario Health Insurance Plan (OHIP) hadn’t yet been introduced, with coverage starting only on January 1, 1968. Medical expenses, including doctor’s visits and prescriptions, were typically paid out of pocket, costing anywhere from $2 to $5. During that era, the average earnings for an office worker working a 40-hour week hovered around $16 to $20
During my infancy, at 3 months of age, I experienced an illness of Strep Throat, followed by Scarlet Fever and Rheumatic Fever, which I was told may have resulted in the development of my leaky mitral valve and aortic valve.
Reflecting on my childhood with only the eyes of a child, I vividly remember my mother leaning over my bed many nights, the hallway lit behind her, as she warmed a cotton ball to place in my ear to help with the pain. She often applied Vicks to soothe my throat and chest and made homemade cough syrup from the juice of brown sugar and onions. Concerned that I might lose my hearing, she would hold up her wristwatch to my ear, asking if I could hear it ticking.
One day, we climbed a large external staircase of an office building. Upon entering, my mother stood anxiously by the door while an older gentleman encouraged me to come closer and tilt my head. Recently, my family physician remarked that my eardrum had a scar from a previous eardrum perforation.
During my childhood, I caught the usual childhood illnesses, such as chickenpox, along with my brother and cousins, and had measles three times.
At six years of age, my family moved from the city to the countryside. My brother and I eagerly anticipated a ferry trip to Toronto Island one summer. However, on the walk to the Grey Coach Bus stop, the world went black, and I suddenly fainted and collapsed. We returned home and took the trip the next day. During that time, I had several fainting episodes, which went undiagnosed.
I often experienced periodic leg pain that continues to this day, mainly during damp/cold weather. I remember sobbing as a child on the couch with my legs wrapped in woollen blankets while my Great Aunty Mary and mother comforted me. I was taken to see a doctor who had me walk in my stocking feet and then on my tiptoes around his office. He told my mother my symptoms would improve once I began wearing high heels.
As a child, pain relief options such as over-the-counter medications were not readily available, so I learned to endure the discomfort and accept it, along with the overall quality of my health, believing it to be normal.
When I was in grade three, my teacher brought a scale to the classroom and called me to her desk to stand on it. I weighed 35 pounds. She sent me home with a note advising that I was underweight for my age.
While attending school in grade four, I was hurt and puzzled when my friends started laughing. I was brought to my teacher, who placed me in an empty classroom, where I sat alone for the remainder of the day. When my mother returned home from work, she immediately covered all the mirrors so I could not see my reflection. Dr. Cowan arrived, ducking his head as he entered our home. He prescribed Vitamin B12 for Bell’s Palsy and told me to wear glasses to protect my eyes.
I often had sore throats and earaches. A German family living next door suggested gargling with salt water and chilling a cloth in cold water in the fridge before wrapping it around my throat. I use this treatment to this day.
When I was around 14 years old, I applied to be a junior camp counsellor at Camp Bolton. One of the requirements was getting a malaria vaccine, which, in hindsight, seemed a bit odd. That evening, I suddenly fell ill with a fever and started to hallucinate, seeing a menacing figure looming over my bedroom door. I’ve since been cautioned to steer clear of live vaccines.
When I started experiencing periods of vision loss accompanied by flashing zigzags, I went to an optometrist who referred me to a physician at a hospital. The doctor asked if I had ever experienced headaches, to which I replied, “Yes, doesn’t everybody?” He turned to his assistant and then informed me that my eyesight was satisfactory and that I was experiencing migraines.
In 1982, during my pregnancy with my first child, I participated in a Canadian Red Cross study. My obstetrician warned me of a challenging delivery, indicating that a C Section would be necessary. I developed preeclampsia, which progressed to eclampsia, resulting in seizures during the difficult delivery. This ultimately led to an emergency C Section and a subsequent blood transfusion and antibiotics. While in recovery, a Canadian Red Blood Cross rep visited my hospital room, took a blood sample and, in a few hours, informed the hospital that I had developed anti-IgA antibodies, prompting an immediate cessation of the transfusion. My obstetrician reassured me there was no cause for alarm, as I possessed other immunities; however, the Canadian Red Cross recommended that I wear a medical alert bracelet for my safety if I required another blood transfusion.
A year later, the Canadian Red Cross tested my mother, husband, and child for low IgA antibodies. All results were negative except for my baby, who had low levels. They then expressed interest in my potential blood donation due to a rare blood type but later advised against it after discovering concerning factors that could impact my cardiovascular health.
I have been diagnosed with sleep paralysis, restless leg syndrome and pneumonia, peptic ulcer, shingles, acid reflux, and hiatal hernia and shingles.
I also received a diagnosis of granulomas of the lungs, which the specialist thought might be sarcoidosis of the lungs but later stated it could be due to my immunities but didn’t elaborate. I had yet to be diagnosed with primary immune deficiency disorder. PID.
In my professional roles, I worked in downtown office settings and relied upon public transportation. During that time, my employer, half in jest, said that one could only take a sick day if one was attending one’s own funeral.
I frequently experienced periods of illness, and to maintain productivity, I resorted to various traditional home remedies. I occasionally exceeded the recommended dosages of over-the-counter cold and pain medications to persevere through the workday. One year, I planned a holiday and worked extra hours to update my time-sensitive files. Unfortunately, I fell ill and was prescribed an antibiotic for an infected tonsil that had turned green.
Yearly flu shots were not widely available until the early 2000s.
I was directed to a specialist due to persistent painful swelling in my parotid and submandibular glands. Although no specific cause was identified, I was informed that the glands could be surgically removed; fortunately, it resolved over time.
My family physician referred me to an allergist, who informed me I didn’t have an allergy. Upon reviewing my medical history and conducting blood and vaccine tests, I was diagnosed with primary immunodeficiency.
The day after my 70th birthday, I received my first subcutaneous infusion of IgG immunoglobulin, thanks to my Allergist/Immunologist and the kind assistance of my subcutaneous specialist nurse.
I am enjoying my golden years. My husband and I have raised two sons who have matured into fine young men with their own families. I take pride in being the grandmother of three healthy grandsons and one granddaughter.
The COVID-19 pandemic highlighted the importance of obtaining all the appropriate vaccines and advocating for my health to my family and friends.
I no longer depend on public transport daily or engage with the public as I once did during my working years.
My journey has led me to understand my health, my diagnosis, and the significance of primary immunodeficiency (PI).
I faithfully take my weekly dose of IgG immunoglobulin and stay up to date with my vaccinations, all of which have reduced the number of infections and improved my health and well-being.
For this, I am ever grateful.