How to Find PNH Support When It Feels Like You’re One in a Million
The phrase “you're one in a million” often conveys a positive sentiment. However, in my case, when I was told that my diagnosis was 1 in a million, it felt incredibly lonely and frightening. I found myself asking, “How am I supposed to know what to do? Who should I talk to? Who has the experience to connect with?”
My name is Selena Burland, and I was diagnosed on November 7, 2022, with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia (AA). PNH is a rare disorder in which red blood cells break apart prematurely, while aplastic anemia is a serious condition that occurs when the bone marrow fails to produce enough new blood cells. Together, these conditions create a severe and life-threatening situation, leading to blood transfusion dependence and significant health challenges. To treat my conditions, my only option was to undergo a bone marrow transplant (BMT), which I received on February 13, 2023. One of the most critical factors for surviving a BMT and managing PNH is support, but it’s not always easy to find.
How I Found PNH and Aplastic Anemia Connections
Initially, finding support was challenging. I felt incredibly alone and confused about how to cope with my diagnosis without anyone to relate to. I tried Googling information about my conditions and available treatments, but I only found basic knowledge and no support groups. That’s when I turned to social media. I began searching hashtags and looking for pages that could offer more. While I found some connections, they were limited.
It was only after I started sharing my story online that my videos began reaching others who also had PNH and had undergone a BMT. This experience gave me a sense of purpose. I was able to connect with individuals around the world through social media, many who also felt isolated and lacked information. As I shared more, I created a small community where we could ask questions and support one another. I also discovered Facebook groups that provided support.
One particularly informative group is the PNH Foundation
Another helpful and engaging group to join for PNH support is PNH Patients
While this isn’t a specific PNH-only group, Aplastic Anemia is often linked with PNH. This Aplastic Anemia Group has many PNH patients who provide excellent advice, connections, and support
Lastly, my small community through Instagram is always accepting new members: Instagram BMT, AA and PNH Members
Why Finding Connections Matters
Initially, it was daunting to put myself out there on the internet during such a vulnerable time. I found that the more I engaged, the easier it became. Not only did I feel more comfortable sharing, but the benefits of doing so were amazing. I received support and was able to give back to others who were recently diagnosed. Raising awareness about both PNH and Aplastic Anemia is also crucial. Many family members, friends, and even medical professionals are unaware of these conditions and their implications. Spreading information about the seriousness of these conditions can help those who may know someone affected by them.
Now, two years after my diagnosis, I am doing remarkably well and have a strong support network. Knowing that I am not alone in this struggle alleviates much of the mental weight and stress. Even on tough medical days, I feel more at peace because of the connections and support I’ve made along the way.
More on PNH here.