Brandi Lewis shares how joining patient groups and rare disease organizations helped her navigate the uncertainty of a new paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. She reflects on the reassurance found in shared experiences, the value of community support, and the peace that comes from not feeling alone.
Transcript
Yeah, so in the early days, I really did want to find a PNH community. I felt like there’s no other better connection than with another patient that has gone through this journey and is much further along in it than me. I think speaking to someone like that, a patient like that, really helps kind of calm those worries and fears.
And so for me, I just looked on Facebook. That was really where I went. There’s a really good group on Facebook, a private group for PNH patients, just to ask questions and to get information.
I also went with the AA and MDS Foundation. They’re really great about helping get newly diagnosed and patients that’ve been on this journey for a while, just the information that they need, wherever they are in their journey. And they’re really good with financial care as well.
So they really helped me and my family out, around finding, like, a hotel to stay in, once I found a specialist. They really helped us navigate that journey for the first time. Just because it can be so daunting and it’s just a lot of information you’re getting in the beginning.
So having that community really helped me, further along in my process and really helped my caregivers as well, which were my parents, just feel like more comfortable of having a safe space of someone that really cared and understood what we were going through and just helped, helped us navigate that journey.
I also just turned to NORD at the time, National Organization of Rare Diseases. They were having in-person meetings at one time, so I was able to go to an in-person meeting very close to me of where I live, be able to talk to other patients, and that’s really where I found my specialist was, at one of those groups, and I asked one of the patients, “Can you tell me, you know, where do I look for a specialist? How do I get this information?”
And she really wrote on just like a, a piece of paper in a notebook. And, and she tore it out of a list of five doctors that she was like, call all of these and figure out which one works best for you.
I say start there just because that is where I found just more peace, and just I felt less alone. That Facebook group of reading and seeing what other people were going through and seeing the questions that they were asking, I was like, “Oh my gosh, I, I identify with that. I’ve been through the same thing.”
And even when I didn’t ask a question in the group, I just felt like, OK, I feel less alone in this experience. And that helped me, I just feel like just kind of get to where I needed to be health-wise.
