The Blood Within Me
A Journey of Rarity, Resilience, and Self-Discovery
This is the story of my unexpected journey into the world of rare blood types. It's a tale of medical mystery, scientific curiosity, and the challenges and triumphs of living with Rh-null blood – the rarest blood type on Earth.
Join me as I navigate a world not quite designed for me, seeking answers, connecting with others, and embracing the unique power within. This is a story of self-discovery, resilience, and the extraordinary things that can happen when we dare to explore the mysteries within ourselves
The Blood Within Me
A Journey of Rarity, Resilience, and Self-Discovery
It all started in 2021, a seemingly ordinary day that turned out to be anything but. I was sorting through old documents, the kind you stuff in a box and forget about, when I stumbled upon a medical record. My blood type was listed as… well, not listed at all. Blank. But beside the Rh factor, there was a curious word: "Null." I'll admit, my initial reaction was a touch anticlimactic. "No answer?" I thought. "Couldn't they even hazard a guess?" Oh, the irony. If only I had known the odyssey this "Null" would launch me on.
Fast forward a year, and the phrase "golden blood" drifted into a conversation with friends. Suddenly, that "Null" on my forgotten record crackled with possibility. Could it be? Was I one of the rare few with Rh-null blood, the "golden blood" whispered about in medical circles? My inner Sherlock, always eager for a mystery, perked up.
My quest for answers began with an online blood type calculator and my trusty Ancestry DNA file. The result? A frustrating "Inconclusive." It tentatively suggested I was A+, just like the doctors had recently told me, but admitted there wasn't enough data to be sure. Undeterred, I turned to the Genome Map app, ready to delve deeper into my genetic makeup.
And it was the Genome Map app that truly opened my eyes. The results were a twist . While the app confirmed the presence of the RHCE gene, associated with Rh-null blood, it also revealed that nearly all my other blood group information was missing. Just two lonely antigens remained, one Duffy, one Lutheran, like the last survivors of a genetic shipwreck. This wasn't just some quirky anomaly; this was a glaring neon sign flashing "RARE!"
This discovery sent me tumbling down a rabbit hole of research. I learned that Rh-null blood was first identified in 1961 in an Aboriginal Australian woman. Since then, only about 50 individuals worldwide have been reported to have it. This rarity brings with it a unique set of challenges: a constant need for vigilance, a reliance on a small network of potential donors, and the ever-present awareness that your very blood is a treasure others might seek to exploit.
The more I learned, the more questions I had. I looked back on past experiences with fresh eyes. Those bouts of what doctors diagnosed as post-operative pneumonia after a couple of my pregnancies – could they have been misdiagnosed ABO incompatibility reactions? The fact that not all my pregnancies were followed by these complications made me wonder if perhaps my last two sons might also have Rh-null blood, especially since their blood type was also reported as A+. The possibility fueled my determination to uncover the truth.
Determined to find answers, I enrolled in the All of Us Research Program, a massive health study that promised a full genome sequence.
The wait was excruciating, but finally, the results arrived. They confirmed missing antigens consistent with Rh Null. Additionally it told me about the presence of rare and highly sought out protective markers and genetic variations, including a TLR3 gene and CAST genes, the kind being explored in cutting-edge CRISPR research. But the details were frustratingly vague and no yes or no answer to my quest to confirm or deny my claim to having GOLDEN BLOOD. It's like my raw genetic data remained locked away. It was like being given a glimpse of a hidden world but denied the key to enter.
Frustrated but not defeated, I cast a wider net, reaching out to scientists, blood specialists, and online groups dedicated to rare blood types. My emails, filled with a mix of scientific terms gleaned from late-night research and the raw emotion of a woman on a quest, were met with a mix of responses. Some were kind but confused, others dismissive, and many simply unanswered. Perhaps my lack of formal scientific training made my inquiries seem less credible, or maybe the world of genetics was simply too busy to entertain the questions of a self-proclaimed blood detective.
And then, there were the warnings.
Whispers of a hidden world where my blood was a valuable commodity, a target for those who sought to exploit the rarest of the rare. One woman's message, in particular, sent chills down my spine. She urged me to change my name, disappear, become a ghost in the digital world. "No one with Rh-null blood would ever risk being online," she warned. Her words painted a chilling picture of vulnerability and isolation.
But fear wouldn't be my guide.
I refused to let the doubts and warnings define me. Instead, I turned to creativity, to connection, to a celebration of the extraordinary. I will find answers some how! Since I'm so distant with my mothers side of the family, I need to A: find my father, B: figure a way to get someone of interest my blood sample. (without getting myself kidnapped) But how do I get my blood out to them? A month ago it hit me and I began crafting golden bloodstone jewelry, each piece containing a tiny drop of my own blood. These are more than just adornments; they are a testament to my journey, a way to share my story, and a symbol of hope for others navigating the uncharted waters of rare conditions.
This is where my journey stands today.
I continue to seek answers, explore the complexities of my genetic makeup, and connect with others who share similar experiences. I am not a professional jeweler, but rather an amateur, learning and experimenting as I go. This website, and the jewelry I create, serve as a platform to raise awareness about rare blood types, fund further research, and build a community around this fascinating aspect of human biology.
If you are intrigued by my story,
curious about golden bloodstones, or simply looking for a unique piece of jewelry, I invite you to join me on this journey of discovery. Let's explore the mysteries of rare blood types together. Let's celebrate the extraordinary within each of us. Let's illuminate the world, one golden bloodstone at a time.