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PNH Paroxysmal nocturnal hemoglobinuria

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Old Fri Mar 30, 2018, 12:04 PM
Marrowforums Marrowforums is offline
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PNH mentioned in TV show The Good Doctor

In the March 26, 2018 episode of the fictional medical TV drama The Good Doctor, the physicians are trying to treat a college student with injuries from a hazing incident and possibly other causes.

In one scene, one of the doctors on the team suggests that the student may have paroxysmal nocturnal hemoglobinuria. Another doctor says "PNH? The chances are 1 in a million" and the topic of PNH does not come up again.

The chances of acquiring PNH may be close to 1 in a million, but the chances of an average person having PNH at any given time are closer to 16 in a million. The TV show writers apparently didn't distinguish incidence from prevalence.

The incidence and prevalence of PNH are still not well-established.

Incidence measures the number of new PNH cases diagnosed per year, or over another time period. The Aplastic Anemia & MDS International Foundation reports estimates of 400 to 500 new PNH annual diagnoses in the U.S. Since the U.S. population is 325.7 million, that's an annual incidence rate of about 1.2 to 1.5 cases per million people.

Prevalence measures the number of people having PNH within the population. Past studies in Great Britain and France found an incidence rate of about 1.3 cases per million people and a prevalence of about 16 cases per million people. That would put the U.S. PNH population at over 5000 people.

Viewers may not have learned much about PNH from this TV episode, but at least the disease was pronounced properly!
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Old Mon Apr 9, 2018, 12:00 PM
GoodDay5150 GoodDay5150 is offline
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Some good info here. I was just talking abt my PNH treatment; in my case a stem cell transplant-no Soliris, w/ my cousin who is a nursing instructor. I always tell people that PNH is diagnosed in abt 1 in 1.5 million people. I always ask the staff at the clinic I go to in Denver Co if there are any new patients w/ PNH. The last doctor I asked said that they get abt 3 every year. Only 2 hospitals in the Denver area perform stem cell transplants on adults, according to what I have been told, and I know of some other patients w/ PNH in Colorado who are treated by different clinics/ specialists. What we can all take away is that if you are diagnosed w/ PNH, make sure your doctor is experienced in treating PNH, and there are many resources online to assist patients w/ finding a specialist.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Tue Apr 10, 2018, 01:01 PM
Leigh Clark Leigh Clark is offline
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Thanks, Mario, for sharing. If you are interested, AAMDSIF is hosting a patient and family get together in Denver on Friday, April 20, 2018- hope to see you there. https://www.surveymonkey.com/r/AAMDSIF_DenverFNS.
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