How has primary immunodeficiency impacted your daily life, including work, school, or social activities?
PI makes me terribly aware of the numbers of other people, their health status and whether they have scent on the moment I enter a room as there is always a possibility I will have to leave for the sake of my health.
What’s one misconception about primary immunodeficiencies that you wish more people understood?
People assume you are just like them because you look “normal”. Most do not have any understanding of the risks you are taking going out, dining out and especially having to go to the doctor, drug store or Emergency. I wish more doctors understood PI.
What’s one thing you’ve achieved this year that you are proud of?
I provided ImmUnity Canada with a story of my life for their British Columbia Education Day and was awarded the R. Michael Whelan Award for my work supporting the PI community group and working with research projects that are relevant to this community.
If you could share one message with the world about living with a primary immunodeficiency, what would it be?
Obtaining a diagnosis is a monumental task especially where there are few tests that GP’s know of or can access to prove this problem. However, you must be persistent and not allow the medical profession to “gaslight” you or tell you that you are abusing the system when you need so many antibiotics in the course of a few months. Have faith in yourself because you know what you need.
Can you share your experience with Primary Immunodeficiencies? What emotions and revelations have been encountered along the way?
I have IgG Subclass 2 Deficiency and no IgA.
I was clearly born a zebra, but back then they didn’t know anything about PI, they simply called it “Failure to Thrive”. At 6 months, I weighed less than I did when I was born and I was so ill that the slightest noise caused me to vomit up my food. My Mother was told I would not survive. My Mother knew she couldn’t have any visitors in case they brought a slight cold or illness with them and she couldn’t take me out like normal babies. The doctor always visited the house when my Mother phoned about me. She discovered that the only meal that stayed down was at 2am in the night so she got up and made sure I always had a good feeding then for a full year. I managed to survive thanks to her vigilance, but I caught every childhood disease that existed, measles, mumps, chicken pox and whooping cough, as well as allergies to almost everything,- cats, dogs, feathers, flowers, unpainted wood and wool.
I was blissfully unaware of the problems I had until about age 7 when I overheard my parents discuss whether or not to try for a boy. My mother thought about it and said, “What if we got another one like Delia, I know I could not ever go through that again, it would just kill me.” So I became the youngest daughter of 2 and thankfully my older sister was perfectly normal.
I loved to Dance and wanted to become a ballerina. Then I developed RA at the age of 12. We didn’t have the wonderful medications that we have now and I was on as many as 8 aspirin/day which caused a lot of bleeding.
I went to University and became a teacher. But the doctor who had to approve my medical insurance looked at my swollen knees and said he would have signed another kind of document in a shot. (I now know that would have been Disability forms.) He looked at the rings on my finger and asked what my husband did and then tossed my papers in the garbage and said I didn’t need medical insurance because I would be on my husband’s plan. (Many places still require the proof of medical insurance before you can obtain employment.) The only reason I managed to keep this teaching position was because my husband had a good job.
What challenges did you face during diagnosis, treatment, and the everyday reality of living with this condition?
I kept on getting sinus infections and pneumonia that would not go away. My GP was frustrated by the number of antibiotics I constantly needed, especially because there is a huge “push” not to write too many prescriptions for antibiotics. I was sent to an Infectious Disease specialist who looked at my history and told me I was “abusing the system” because she neglected to determine that I had a toe infection (podiatrist), sinus infections (GP), and tooth infection (dentist). I never went back to this doctor. But suddenly I remembered that an allergy specialist had once told me I had a problem with my immune system and would likely need IgG infusions one day. He also said I would “get an infection that I couldn’t get over and probably only survive a couple of years after that”. It was 10 years later but I asked to return to this specialist and was put on IgG immediately.
I was very distressed and unhappy going to the hospital every 3 weeks because his words kept returning to me. One of the nurses sensed my distress. She told me about an Education Day provided by CIPO (currently called ImmUnity Canada). You can imagine my joy when I met people who had been on IgG for 10 years and seemed to be managing fine. I now use SubQ at home and am very happy. It is safer for me not to go to a hospital, especially during Covid.
If you could send a singular, powerful message to the world about your condition, what would it be and why?
Primary Immune Deficiency affects every aspect of your health. If doctors have a patient with multiple infections and autoimmune diseases, their patient should be checked for PI immediately.
There also needs to be a course for all doctors on the problems of PID, especially in the Emergency Department where we often need to go. We don’t get high fevers and checking our infection levels with blood work may not show anything (no IgA to react) but we can be extremely ill. Treat PID patients immediately. We may die before your cultures prove anything.