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PNH Paroxysmal nocturnal hemoglobinuria

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Old Sun Oct 18, 2015, 05:08 PM
MyraN MyraN is offline
Join Date: Oct 2015
Location: United Kingdom
Posts: 1
PNH impact on work

I would like to know what other PNH patients' experience is of the impact of their condition on their work life. Were you able to carry on working before/after diagnosis? Did you have to stop working at any time? If so, how was the return back to work? Can you still perform stressful work in jobs that require long hours?
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Old Mon Oct 19, 2015, 02:27 PM
czar63 czar63 is offline
Join Date: Oct 2015
Location: Chula Vista, CA
Posts: 1
Hello. I presented with very classic symptoms when I was 30. I was fit and active but PNH would occasionally humble me. Everyone is affected differently. How is your fatigue, do you have muscle soreness, shortness of breath, how often? All or any of those things and others may make work a very challenging activity. First, don't blame yourself for the 'new normal' that PNH establishes; the fault isn't yours and blame won't help (I know). Next, try to be patient with others. My spouse and most of the folks who I've known since my diagnosis 20+ years ago still don't realize the daily challenge of chronic anemia.
Choose your battles, listen to intuition. You may feel overwhelmed until life becomes familiar again. It will.
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Old Tue Oct 20, 2015, 06:30 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 131
Hi Myra. My PNH greatly impacted my work performance. I was working full time until the day before that I went into the hosp for a stem cell trans. I was falling asleep at work on a regular basis, and I was nvr diagnosed until about 7 mos b4 my transplant. At that time I began taking a blood thinner, but no Soliris. I feel great after my transplant compared to how I was for prob almost 10 yrs. Good luck in your treatment.

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