My PNH journey has been one of family, strength, and hope
Being a parent with a chronic illness presents rare challenges
Life has a way of throwing unexpected challenges our way, and for me, one of them came in the form of the rare disease paroxysmal nocturnal hemoglobinuria (PNH).
In May 2017, at the age of 27, I was diagnosed with this life-altering condition, which causes the destruction of red blood cells, leading to severe fatigue, blood clots, and other complications. While my journey to diagnosis and since has been mentally and emotionally draining, it’s also been marked by adaptation, resilience, and immense love, especially from my husband, two amazing children, and other family members.
I knew that navigating life with PNH would require strength, and not only from me, but also from my loved ones. My children, who were young at the time, have grown up witnessing my struggles and triumphs. They’ve been my motivation on days when the fatigue felt overwhelming, and they’ve shown a level of empathy and maturity that fills me with pride. Being a parent with a chronic illness presents unique challenges, but it also deepens the bond between us as we learn to face adversity together.
My family has been my unwavering support system. From my partner’s constant encouragement to my extended family stepping in to help when needed, I’ve never faced this battle alone. Their understanding and willingness to adapt to my needs, whether accompanying me to medical appointments, helping with daily tasks, or simply being there to listen when I’m frustrated, have made all the difference. Living with PNH isn’t just my journey; it’s something my entire family experiences in different ways.
Beyond my personal circle, I’ve found strength in connecting with others who share this condition. The PNH community has been a source of knowledge and comfort, offering insights into new treatments, coping strategies, and emotional support. Excellent resources are available for people living with PNH, such as the Aplastic Anemia and MDS International Foundation and the PNH Global Alliance, which both provide invaluable information and support networks.
Despite the difficulties, I remain hopeful. Advances in medical research continue to provide better treatment options, and with the love of my family and the support of the PNH community, I’m reminded daily that I’m not alone in this fight. My children, my greatest joy, keep me going, and together, we embrace each day with gratitude, resilience, and hope for the future.
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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Manny gordon
I love this write up