HA CONNECT: Where I Found Life-changing Community
My name is Carly, I’m 27 years old, and I was diagnosed with hydrocephalus at one month old. I’ve had 20 brain surgeries, 14 of which were shunt revisions. When I was in my junior and senior years of high school, I had six revisions within six months.
Prior to these revisions, I never really worried about my hydrocephalus, when the next brain surgery would be, or truly knew anyone with hydrocephalus except for a family friend. When I started having frequent revisions within a short period of time, I felt alone. I didn’t have anyone in my life who understood what I was going through.
After experiencing these revisions, I learned about the Hydrocephalus Association (HA). Through HA, I started a WALK for the Jersey Shore community and became a Community Network Leader for New Jersey. Slowly, I started to find my community and where I felt like I belonged. When COVID began, we started having meetings virtually, and I gradually started to build friendships with others who have hydrocephalus like me.
In 2022, I attended my first National Conference on Hydrocephalus, HA CONNECT, in Austin, Texas. At HA CONNECT, I built stronger relationships with those I already knew from the WALK community and virtual meetings. It was an experience that I’ll never forget because I finally had the opportunity to meet my virtual friends in person, like Genesis, who has become one of my best friends. If it wasn’t for HA CONNECT, I don’t know when we would have met. Our bond has grown tremendously. I don’t remember a time when we didn’t know each other. I truly don’t know what I would do without her.
During this conference, I also got to grow my bond with Lindsey, a fellow WALK chair, her daughter Taelley, who has hydrocephalus, her two siblings, and Lori, who is also a WALK chair. I first met Lindsey and Lori during WALK training, but getting to know them better and spending time together at the conference is what truly created lasting memories—ones I will never forget.
When we planned our trip to attend HA CONNECT in 2024 in Tampa, Florida, we automatically knew we wanted to plan excursions together before attending the conference to spend more time with one another. Our friendship and bond are so strong that Lindsey, the kids, and I visited Lori and her husband, Mitch, last Summer, and we already have plans for our next adventure together. Lindsey, Lori, and I have built such a strong bond that we can have open conversations about anything with no judgment.
During the HA CONNECT 2022, I also got to meet Tina for the first time, and from the moment we met, we were linked forever. Not only do we both have hydrocephalus, but we also live in the same state, which has allowed us to spend time together more often, not just at the conference.
HA CONNECT is truly like an enormous family reunion. Every two years, you get to see the friends you’ve made, and you pick up where you left off. It’s as if no time has passed at all! If you have never been to an HA’s National Conference before, you will leave with lifelong memories and friendships. Being in a place where everyone understands what you’ve been through is an amazing feeling. I don’t know where I’d be if it weren’t for HA CONNECT! I’m looking forward to the 19th National Conference on Hydrocephalus this summer in Indianapolis, Indiana!