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New Medical Alert on H1N1 (Swine Flu) and Prader-Willi Syndrome

Dear parents & providers,

Although there are children and adults who have Prader-Willi syndrome who are getting the H1N1 with no serious consequences, because of recent calls I have received involving very serious responses to the H1N1 including two deaths, I feel compelled to do all I can to encourage you to see that your child/adult who has PWS gets vaccinated.  I hate to scare you, but decided it is worth the risk to help you understand how swift and lethal this virus can be.

Here are some of the recent cases and information that prompted this alert:

  • We had a 12-yr-old girl who was obese, but otherwise healthy die from H1N1. She appeared to be getting better and then had a rapid decline.
  • We have a 9-yr-old boy who is obese in intensive care with H1N1 who now has multiple complications.
  • We had a young man who has PWS that had a very rapid decline (in a matter of hours) from initial symptoms to heart and respiratory failure, but his parents rescued him with CPR. He was on a respirator but lived. He was asthmatic.
  • I talked to one of our PWS mom’s whose 18-yr-old son died from H1N1. He was fine on Thursday, but woke up in respiratory distress on Friday and stopped breathing within the hour. He was not asthmatic and had never had prior respiratory problems or other health care issues other than his PWS. He was overweight. He weighed 240 lbs and was 5’3”. I also heard about another 6-yr-old girl who had a rapid respiratory decline and had to be rushed to the ER.
  • One of our clinical advisory board (CAB) members wrote, “I also have a 15 year old with PWS and H1N1 on a vent.” He is morbidly obese.
  • Another CAB member wrote: “It should also be pointed out that the World Health Organization (and others) have found that obesity, and especially morbid obesity, have been present in a large portion of the severe and fatal cases, and that people who have diabetes and asthma are at higher risk than those who don't have these conditions.”

Below is a link to our alert with revisions due to the fact that many places are no longer testing to confirm it is the H1N1. Also, I have received calls asking if it is safe to use the nasal spray with the live virus. Our advisors think it is safe, because our children typically do not have an immune system problem, but that decision needs to be made between you and your PCP. For more regarding the safety of this vaccine, go to:,0,3212579.story 

I would recommend that you print out this entire Letter and the web page linked below to have it available along with the PWSA (USA) Medical Alert booklet.

Janalee Heinemann
Director of Research & Medical Affairs

Click here for What Should be Done for People with PWS and the H1N1 Influenza (Swine Flu)?


edited: 02/09/2012

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