Hollie Amadio shares her journey living with hereditary angioedema (HAE) and multiple sclerosis (MS), from navigating the challenges of chronic illness to discovering the power of community support and advocacy. She reflects on connection, resilience, and the impact of sharing personal stories to drive change and inspire others. Read her column Living Rare, Speaking Loud.
Transcript
Hi, my name is Hollie Amadio. I live in southern Maryland and I live with hereditary angioedema and multiple sclerosis.
Living with multiple chronic illnesses can be very difficult, but you can find a way to maintain. Oftentimes, I know my situation, they feed off one another. And until I was able to get on the correct treatments that were right for me and catered to me, it was a very difficult road.
I got very involved with the community slowly but surely. Like, in the HAE community, like, I didn’t even know that existed either. I remember when I first got on the rescue medication that people would call me, but I never really knew what it was.
I didn’t look that into it. But it took me being in that support group and learning things from other people that were involved, connecting with the community and so many different people. I’ve just learned a lot.
Through events within the HAE community, I’ve connected with people. And then, you know, I was inspired about advocacy. I’ve known of advocacy and fundraising through different organizations, like their walks and what they — once a year you raise money for.
But I didn’t know the levels to advocacy that we were capable of doing and the differences that we can make, with that and the legislation that we could — I never knew any of these things, and it was just connecting with people and connecting with the right people in the community.
And just learning. You develop a passion because these are things that I know I’ve experienced. Like, certain things you experience living with chronic illness, especially with healthcare coverage or just getting the treatment that you need, or an early diagnosis — just anything. I never knew until connecting with the community the things that we could do as the patients. Our stories are what need to be told.
You can tell someone, oh, we need to do this, we need to do this, we need to do this. But what’s that going to do? They hear you, but when you share real life, your real life lived experience, and the effect that it has on you — and knowing that you don’t want this for anybody else — you can go to Capitol Hill.
You can do virtual. If you get involved with different organizations, you can do virtual events. Or if you’re not comfortable, you can send an email.
There were seasons in my life that I’ve gone through trying to manage and get control of my own health, and until I got the right treatment for me, like, that was a season in my life that I never wish to go back to.
Even with mental health — your mental health declines, and when your mental health declines, your physical health will decline also. Then it’s already declining, because I feel like your mental health has a direct effect on your physical health.
Doing all of these things is something that I have grown to be very passionate about. I feel like that all came from just connecting with the community and learning so much more. Just taking the medicine is like not doing therapy with your mental health medications. You are treating the symptoms. You’re not treating the cause.
