Answering one of the biggest questions after my PNH diagnosis
Is a 'normal' life possible with PNH? Absolutely, says this columnist
When I do a Google search of my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), the first question that pops up is, “Can you live a normal life with PNH?”
When I was diagnosed in 2019, I had the same question, fearfully wondering if a normal life would be possible again. After a few years, the answer to that question for me is yes, I’m living a normal life — but my definition of “normal” has changed.
I’d like to answer some of the questions I had when I was diagnosed. Now that I have PNH, can I …
Yes. Communication with an employer is key to my success when working with PNH. Discussing my needs in terms of scheduling treatments, sick days, and calling off helps me create a comfortable working environment.
Yes. Exercising with PNH is definitely more difficult, but absolutely possible. I can work out, just at a slower pace. I take more breaks, drink more water, and listen to my body to avoid overexerting myself.
Yes. Traveling with PNH is possible; I just have a few more logistics to work out beforehand. I look at the calendar to make sure travel dates won’t interfere with my treatment schedule. To help me avoid a possible blood clot, I keep compression socks handy if I’m traveling on a plane. I make sure to have all of the medications I need, plus my patient safety card from the pharmaceutical company.
Attend events and participate in activities?
Yes. Committing to events and activities in advance is tricky because of my unpredictable energy levels, but I rarely say no. I value spending time with my loved ones, so I adjust my new normal for events. I always have my own car available, for example, or my husband and I will drive separately from the group in case I feel symptoms and would like to leave early.
In the worst case, if I don’t feel well the day of the activity, I politely let the host know the situation and don’t attend.
Maintain a relationship with a significant other?
Yes. My husband and I were together before PNH, and we’re still together after my diagnosis. Our relationship has encountered new obstacles, but I think it’s relatively normal. Those obstacles include making and adjusting plans to suit my needs, missing out on certain things because of my treatment schedule, and doing household chores when I feel fatigued. All of these issues have been resolved with communication, which has made our relationship even stronger.
Yes. It wasn’t an easy journey being pregnant while having PNH, but it was possible, and I did it. But please keep in mind that pregnancy is an extremely unpredictable experience for anyone, even those without PNH.
Yes. Part of being happy post-diagnosis is acknowledging that I’ll have bad days. But I don’t let them bring down my mental state. Being adaptable and having a go-with-the-flow approach to life allows me to be happy with PNH.
Before PNH, my definition of a “normal” life was being unstoppable. I believed I was capable of doing anything I put my mind to. That definition changed after I learned that I am, in fact, stoppable. I learned to accept the fact that stopping is OK. I now allow myself to pause, reevaluate, adjust to my PNH needs, perhaps take a break, and then regroup and keep going!
What perspective has life with PNH brought you? Please share in the comments below.
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.