This month's patient highlight features Sam, who was diagnosed with Common Variable Immunodeficiency (CVID) two years after her father passed away. Now, Sam manages her PI with weekly SCIG infusions, which help her lead a healthy life despite her chronic illness. She takes pride in showing others that she can do everything she did before her diagnosis—and more! With two kids, a supportive partner, and a fast-paced job she loves, Sam continues to thrive!
Please share a brief overview about your story living with Primary Immunodeficiency (PI).
Being diagnosed with CVID was a pivotal moment for me. I grew up watching my dad undergo weekly IVIG infusions after he was diagnosed with hypogammaglobulinemia at the age of 25. Whilst he was alive I had no idea it could be hereditary. I was diagnosed 2 years after he passed away and at first I was terrified that my life was also going to be shortened like his. There have been studies linking stress and autoimmune diseases and in my case, I do believe this was the trigger. Becoming poorly and getting my diagnosis was the moment I stopped and looked at what was happening to me, and this was the point I changed for the better.
Infusing hasn't hindered my life but bettered it. At 35 I am at my healthiest physically and mentally, I enjoy continuing with my sports and being around people without the stress that I could become sick. I have 2 children, a great partner by my side and a fast-paced job I enjoy. I try to keep positive and not to see my life as being any different living with CVID and my infusions than what it would be without them.
How and when were you diagnosed? Which specific PI disease do you have?
I was diagnosed with CVID in March 2022 at the age of 33 after months of undergoing tests. My IgG levels were critically low at the time and it took a while for the doctors to rule out other potential causes before diagnosing me with CVID. Looking back now I was struggling to fight off infections etc. and my body was telling me to slow down but at the time I thought it was normal and just the way I was. I infuse 50mg of immunoglobulin weekly and my IgG levels now sit within a 'normal' range.
How has treatment impacted your life? How did you decide this was the correct treatment for you?
Moving to weekly SCIG infusions was a no brainer for me. I had recently lost my dad to pneumonia at the age of 56 and knew I wanted to allow myself to live the healthiest life possible. It has been 2 1/2 years since I started my weekly infusions and I rarely get sick or pick up viruses that are going around. It also allowed me to make the decision to move jobs and since January 2023 I have been back in the office 5 days a week. Seeing that I can live a normal life despite my chronic illness has kept any worries that I was having about my future at bay.
Do you share your story with others online? If so, tell us what made you decide to do so.
Yes I do, mainly among my friends and family. I chose to share what was going on once I had my diagnosis, a lot was happening at the time and I wanted to show the positive side and my weekly SCIG preparations. I am very positive about being on SCIG as it's only had a benefit to my life. Showing people I can still do everything (and more) with CVID that I was doing without keeps me grateful.
If there's anything else you'd like to share with us, please do so below.
“Stress is simply the adaptation of our bodies and minds to change.” – Peter G. Hanson, M.D.
Looking after yourself is vital, not selfish. If you don't make time for it, you might be forced to. I truly believe your body will tell you something isn't quite right before any test will.