This post is a follow up to:
Question 9 asked Has your child/family member with MECP2 Duplication Syndrome ever developed pneumonia ….While in the hospital for another reason? …. Continue reading
19 June 2012 Part 1 of this topic addressed the frequency of pneumonia or lung infection episodes among individuals with MECP2 Duplication Syndrome and Part2 addressed the severity of these episodes. Part 3 discusses treatments. Continue reading
19 June 2012 Part 1 of this report discussed the number of episodes of pneumonia and lung infections experienced by children and adults with MECP2 Duplication Syndrome. In this part, information is presented on the severity of these infections and the impact on the individual. Continue reading
18 June 2012 Thank you to all the families to took time to answer a few questions about pneumonia and their family members with MECP2 Duplication Syndrome. This is not a scientific survey and it is not based on a random sample, but rather on families that chose to respond. This could affect the results although the large number of responses in comparison to the relatively small number of known cases suggests that it has some value. In addition, the only demographic data collected was age. This survey does not differentiate between males and females or between individuals with duplications and individuals with triplications. Here are some preliminary results. Continue reading
18 June 2012 This poll is now closed. Results will be posted shortly. Please take a few minutes to help us collect data on pneumonia and lung infections. It is important that we collect information from on as many individuals with MECP2 Duplication Syndrome as possible. Please complete one survey for each member of your family who has MECP2 Duplication Syndrome, even if that family member has never had pneumonia. If you know other families who have MECP2 Duplication Syndrome, please let them know about this survey. Thank you.
The 2013 MECP2 Duplication Syndrome Family Conference is currently being planned. This survey is intended for families to provide input on the conference program. It is a short survey with just 10 questions, please take a few minutes to provide some input.Feel free to answer as many questions as you like and ignore some questions if you feel they are not applicable or you have no opinion about them. Continue reading
A poll on body temperature regulation was taken was taken on this website for one week during April 2012. Primary caregivers responded in regard to Seventy-nine (79) individuals with MECP2 Duplication Syndrome. Ninety-one (91) responses were recorded since some multiple responses were possible if more than one finding was reported. Chart 1 below indicates the percentages of caregivers who reported Continue reading
This Poll is now closed. Results are posted here.
This poll is intended for families or primary caregivers of individuals with MECP2 Duplication Syndrome. Please only respond once for each individual. Please CHECK ALL ANSWERS THAT APPLY. More information is provided below the poll to explain the choices. Continue reading
This poll was for parents or primary caregivers of individuals with MECP2 Duplication Syndrome. Responses were collected from March 27 through April 5, 2012. The poll is now closed but results can be viewed, here. Continue reading