Meet Murilo, a passionate advocate living with Common Variable Immunodeficiency (CVID). Murilo was diagnosed in August 2023 after battling recurrent infections and has faced challenges with courage. We hope you’re inspired by his story!
Please write a few sentences on your overall story living with PI.
I was diagnosed over a year ago and ever since a lot happened. I started my treatment with the insurance provided by my employer but soon I found myself relying on the Brazilian Public Healthcare System known as SUS. Furthermore, I just moved to Malta to pursue my Master's degree and I could only do so because I tried every possible solution to allow for my treatment's continuity in Europe. I've been sharing my history, challenges, and discoveries on social media for a couple of months now and I'll continue to do so. Therefore, it'd be perfect to have the support from JMF which already assists the patient organisation I volunteer for in ELPIB.
How and when were you diagnosed? Which specific PI do you have?
In August 2023 after I had 3 consecutive sinus infections that were treated with antibiotics. I have a history of multiple pneumonias and one of them almost took my life. I was diagnosed with CVID (CID D 83.9).
How has treatment impacted your life? How did you decide this was the correct treatment for you?
I had to manage my work and life schedules around a day for medicine withdrawl and another for Ig infusion every month. I'm still new to the treatment so my MD thinks we should wait to make any changes.
Do you share your story with others online? If so, tell us what made you decide to do so.
Yes, for a couple of months now. I do so because I've learned a lot through the years, and I feel like much information doesn't reach the patients. Therefore, my goal is to inform and make people's lives easier by simply sharing my own experiences and discoveries.
So far, I've made videos about the following topics:
- the medicines I've used
- how I changed from a private health insurance to the public healthcare system
- how to apply for the public healthcare system coverage for PID
- how to make a digital vaccination card
- how to report adverse drug reaction
- and much more