Sharing Your Rare Disease Stories of Hope and Resilience
Hairy Cell Leukemia (HCL) is truly rare. We estimate that approximately 2% of adult patients with leukemia have HCL.
Rare Disease Day, observed on the last day of February each year, raises awareness of the challenges individuals living with rare conditions such as HCL face. So, at the beginning of the month, we asked patients and family members in our community to share their HCL stories.
We highlight these voices and experiences to support a space where everyone with HCL can find comfort in shared victories and similar journeys.
"I needed immediate treatment. Nine months later, I still had so many questions about my life and future that I didn't know how to answer."
Many patients say that leading up to their diagnosis, they had seemingly benign symptoms, like tiredness. So, learning they had HCL was a shock. We also hear how patients in remission still carry the fear of recurrence. One person says that once you notice bruising or fatigue, you keep thinking, "Is it back?" This fear carries over to every doctor's visit.
"The challenge has been to convince the medical profession they can't just google a rare disease and get the correct answer!"
HCL is a rare disease, which means most doctors will have treated few if any, patients during their careers. The rarity of HCL is why we encourage those diagnosed with HCL to consult with an HCL Center of Excellence. We are here to connect patients with an HCL expert or facilitate communication between their hematologist and a doctor with more experience. Navigating a cancer diagnosis is overwhelming, but finding a medical team they trust can bring true peace of mind to patients.
Because most doctors have little experience treating HCL, the patients often become the experts. Many encourage others to attend webinars and forums to stay updated on the latest HCL research. The medical jargon in scientific papers can be intimidating. Still, one patient suggests focusing on the abstract and conclusions in the papers to help you get to the heart of the research.
"Understand that the person you support will be in a difficult place for a long time. Don't expect quick improvement. You say HCL is a "good cancer," but don't underestimate it."
"Offer to help with the little things, even just sending a text to say hi."
Patients with HCL acknowledge that having blood cancer is life-changing. So, family members and close friends are an essential support system for patients to lean on.
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A diagnosis of HCL is scary, but after decades of research and discovery, it is now treatable. Knowledge and a strong support network can help you navigate this journey. The Hairy Cell Leukemia Foundation and the entire community of patients worldwide are behind you.
We thank everyone who shared their stories this rare disease day!