How my support system lifted me up after a PNH diagnosis

Friends, family, and support groups were vital to this PNH diagnosis journey

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by Erin Fortin |

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Being diagnosed at age 24 with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, hit me out of nowhere. I was young and naive, and never anticipated that something so serious could happen to me at that age.

The day I was diagnosed, I went numb after the appointment. It was like a movie scene in which the camera zooms in on my glazed eyes while the world continues moving around me. If not for my loved ones and other members of my support system, I’d still be stuck in that same place.

After learning of my diagnosis, I couldn’t function. Mentally, I shut down, and the only thing I could do was sleep. I remember having a conversation with my then fiancé, and now husband, John, who told me, “Do not under any circumstances Google or look more into PNH. You focus on healing, and we’ll focus on researching it.” That night, my angel of a mother researched the disease enough to become a semi-expert in a matter of hours.

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My mom found a PNH patient support group on social media that provided her with a ton of information and the best piece of advice to help me through the beginning of my journey: The diagnosis is the hardest part, and things will get better from here.

Other patients recommended a specialist that luckily wasn’t too far from me. My mom called first thing in the morning and got an appointment for the next day — just two days after my diagnosis. I was so appreciative that my parents and uncle accompanied me to that appointment. I felt like I was being torn down and needed all the strength I could borrow from them.

The love and kindness that touched my heart

Among the biggest blessings I could have asked for were my mom’s determination while researching, the time she spent making phone calls for insurance issues and doctor appointments, the comfort she provided me during every hospital stay, and the shoulder she gave me to lean on during my PNH journey. She is the true definition of a loving mom.

As my journey continued, family members — both immediate and extended — gave me support I didn’t know I needed until I received it. My father gave me the best bear hugs, my sister came to treatments to help distract me, my brother-in-law gave me belly laughs during my hospitalization, and my grandma prayed.

Family and friends visited me in the hospital and sent messages, flowers, and get-well-soon care packages. These were all acts of kindness that touched my heart and helped to build me up as I overcame many obstacles. I felt like I had a team behind me reminding me that I’m not in this alone.

Watching a loved one go through a difficult health journey is equally hard on family members. John had to see me — his future wife — struggling, and it made our wedding vows — “in sickness and in health” — even more poignant. John’s tough-love approach to supporting me was exactly what I needed.

During moments of weakness, when I felt sorry for myself, John would pick me up and lift my spirits, saying, “No, I refuse to let you fall into a hole. You’ve got this. Keep moving forward.” When I sulked, he would distract me and help me shift my point of view. When I cried, he would wipe my tears and crack a joke to get me to laugh. He was — and is — great at giving me a minute during weak moments to sit with my emotions, and then hyping me up to move past them.

If you are a patient reading this — or anyone going through a difficult time — I urge you to build a support system for yourself. If you don’t have family or other people around, the PNH community is here for you. Join support groups on social media, connect with other patients, and lean on those who are willing to help. You are not in this alone.

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.