Meet Evangelia, who was diagnosed with Common Variable Immunodeficiency (CVID) after her mom’s test results led to a deeper family investigation. Despite challenges, Evangelia is thriving and raising awareness for Primary Immunodeficiency by sharing her story to help others feel seen and supported.
Please share a brief overview of your overall story living with PI.
Getting diagnosed with Primary Immunodeficiency was life changing. My diagnosis brought with it a rollercoaster of emotions ranging, from the relief of finally understanding why I became ill easily, to grieving the loss of my former self, the one who did not know anything about Primary Immunodeficiencies.
How and when were you diagnosed? Which specific PI disease do you have?
About six years ago, my mom received some blood test results showing that her antibody levels were low. Her doctor said this was worth investigating, and also suggested that my sister and I get checked for the same issue. That’s when my journey as a Primary Immunodeficiency patient started. My mom and I were soon diagnosed with a form of Primary Immunodeficiency called Common Variable Immunodeficiency (CVID), and things started to make sense.
How has treatment impacted your life? How did you decide this was the correct treatment for you?
Soon after my diagnosis, I started having monthly subcutaneous infusions. The infusions can be quite painful and time-consuming. I prep beforehand by using numbing cream and taking painkillers and antihistamines. I infuse every four weeks, and sessions last about 3 hours. Thankfully, I was taught how to infuse on my own using a pump. This means I don’t need to go to the hospital for my treatment, but can do it from the comfort of my home. As I mentioned earlier, I’m usually in a lot of pain during my treatment. My tummy, which is where I infuse, is often very itchy and sore. I have to admit that even though I dread my infusions every month, I have seen a significant improvement since starting them. I admit that I find the infusions both mentally and physically exhausting. However, I don't get sick that often and I can lead a normal life. I decided this was the right treatment for me after through discussions with my doctor, who explained the benefits of the infusions in detail.
Do you share your story with others online? If so, tell us what made you decide to do so.
I do! Many people are unaware of Primary Immunodeficiencies, and raising awareness is crucial for patients like myself and their caregivers. People often do not know about plasma shortages, or the challenges patients might face in staying safe. So, sharing our stories helps inform and educate them.
If there's anything else you'd like to share with us, please do so below.
Over the course of time, I’ve realised how important it is to embrace this part of myself. This is still the beginning of a long journey with a chronic disorder, but I’ve come to realise that it’s vital to be hopeful and positive about the future. Being in a good mental state and surrounded my people who love and support you are key to facing a chronic illness. I’m very lucky because I’m surrounded by people who have supported me from the very beginning of this journey. I can’t say how helpful it is to have people who love and support you when dealing with a chronic illness. Moreover, I’ve learned that educating yourself and others about your condition is very important. I’ve also learned that I shouldn’t be ashamed of my condition.