Interacting with fellow PNH patients helps me find answers

Talking to people with experience managing PNH provides important insight

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by Erin Fortin |

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At the beginning of my journey with paroxysmal nocturnal hemoglobinuria (PNH), finding information about my rare disease was difficult and frustrating. Most of the information I found wasn’t accurate or up to date, including topics like life expectancy and having children. So in addition to processing my diagnosis, I was on a search for the truth about PNH.

I’m grateful to have found patient-run support groups on social media, as they have given me better insight into what to expect while living with PNH. Before I found them, I would often be hesitant to pursue my goals and dreams because I was afraid my symptoms might stop me. But witnessing other patients’ success made me want to learn more from them.

When people ask me where I get my information about PNH, I tell them it’s from other patients. I rely a lot on their experiences because they understand what it feels like to have PNH — physically, mentally, and emotionally.

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New friendships

Recently, I decided to search for different treatment options. After discussing it with my doctor, I started doing my own research by talking to patients who are taking the medication I was interested in. I asked questions like, “How do you feel while being on this medication?” “How have your energy levels been?”  And, “What can I expect with my first treatment of this medication?”

I also read treatment information on pharmaceutical company websites, but I try to be mindful of the profit motive. I pay particular attention to possible side effects or other unpleasant issues.

Using social media to find other PNH patients has been a blessing for me. My questions and concerns about certain medications were addressed by people I trust due to their experience. (Not all experiences with PNH are the same, of course.)

I’ve built connections through webinars and support groups, but finding other patients organically is refreshing because there aren’t that many of us.

Finding PNH mentors, and being one myself, has led to new friendships with people around the world. The shared opinions and genuine admiration for each other have given me great fulfillment on my journey. Without PNH, I wouldn’t have made all of these connections.

I encourage PNH patients to look for opportunities to connect with others in the community. Lean on each other, respect their privacy, and learn from their experiences.

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.