I’m bidding farewell to my column, but will continue to share my story
Looking forward to my next chapter of PNH advocacy, community support
After two-plus years of writing for PNH News, I’m saying goodbye to my column, “From Fear to Fighter.” I’ve enjoyed sharing my passion for supporting the blood disorder community. By relating my personal story as well as the tips I’ve learned, I hope I’ve helped others feel less alone.
Living with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) has revealed a world I never knew existed, and I’ve learned a great deal, including how to adapt to unfamiliar environments — a skill I never expected to need. I don’t want anyone, especially those who silently battle their illnesses, to feel unseen or unheard. Please know I see and hear you.
My message to patients and caregivers is to keep moving forward and not look back. Don’t let an illness prevent you from living your life. Whatever that means to you, embrace and heed it. Life can be tough some days, and it’s OK to take time to feel your emotions — just don’t stay there. I’ve never wanted to use my blood disorders as an excuse or crutch, which has helped me persevere through challenging circumstances.
Even as I continue to battle PNH symptoms, I remind myself to follow my own advice: to rest, reset, take time for myself, and listen to my body. My illnesses didn’t dim my light; they only made it shine more brightly. I’m grateful to have been a source of encouragement and support for others who needed some light in their day.
Life has a way of showing us what’s next. As one door closes, another one opens, and I’m excited to take this next leap. While I’m bidding farewell to my column, I’m not leaving the rare disease community. I’ll continue advocating and sharing my story to inspire others.
Recently, I launched a podcast called “The Life We’re Given,” which shares real stories of resilience, life lessons, and how people have overcome tough moments. It’s available on all platforms, including YouTube. I hope you’ll join me on this journey of reaching and helping others through storytelling.
As Winnie-the-Pooh said (in a book by A.A. Milne), “How lucky am I to have something that makes saying goodbye so hard.” I feel fortunate to have had the chance to bring positivity and encouragement to my readers. Thank you for joining me on this journey, reading my columns, and getting to know me. I hope I’ve made a difference in your life.
I leave you with this: Your life is precious, beautiful, and meaningful. Remember, you are here for a reason.
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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