JEFFREY MODELL FOUNDATION

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Please share a brief overview of your story living with Primary Immunodeficiency (PI).
I've received the diagnosis in December 2024, and learned the full confirmation and type in January 2025. It was a journey of 17 years, and I had to deal with a lot of disbelief along the way, because no one knew what was going on. The moment I got my diagnosis I decided to stand up for myself and for other people with PI. I couldn't find one single social media account in my own language from someone who had PI, so I decided to be that person. I've been doing it for 6 months now and got in touch with over 80 people with PI. I have been getting so many messages from people who are glad they found my account and are learning a lot about what it is like to live with PI, or that they have finally found someone they can relate to.

How and when were you diagnosed? Which specific PI disease do you have?
January 2025: CVID/SPAD.

How has treatment impacted your life? How did you decide this was the correct treatment for you?
I started with IVIg for 3 months but got an allergic reaction every single time, so we switched to SCIg and that was the best decision. I'm starting to feel differences here and there and it gives so much hope.

Do you share your story with others online? If so, tell us what made you decide to do so.
Yes, I do. There was no one else who shared in my language, and in no time, I got to meet so many people from my own country but also from the Netherlands (because we speak the same language). I wanted to be the account where people could find info after they receive their diagnosis.

If there's anything else you'd like to share with us, please do so below.
I've been stepping up in my country to create awareness for invisible illness, but also to ask for people to donate plasma.

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