Hello everyone on this board. You may have seen me here before as I have previously posted questions about my daughter’s extensive leg PWS. This discussion board has been very helpful to me!
It is obvious that many people who struggle with birthmarks suffer from the lack of information on this condition. As a mother and a health communication student (getting my MA next Fall!), this became an area of interest for me, and a situation I would love to help improve.
I designed a research project that aims to map types of uncertainty individuals and families affected by birthmarks struggle with. I am hoping that results of my research may have some effect in the medical world. Maybe, just maybe it can reach some doctors to finally consider teaching about birthmarks in medical schools!
For this purpose, I am interested in hearing from you if you would mind if I look at the previously posted messages here, mostly to quantify expressions of uncertainty. This is an ethical issue, because when people post to this board, they do not reasonably expect that their information may be used for research (even though the information is publicly available). Obviously, names, usernames, and any other identity information will not be included in my study. Please let me know what you think!!
Also, with the agreement of VBF founder Linda Rozell-Shannon, I developed a short questionnaire that you can link to:
It should take about 10-15 minutes to take the survey.
If all works out well – and I am confident it will! I will post the study results on this website over the summer.
Thanks so much,