WOW!!! Some very passionate arguments all around this issue. For my part I acknowledge the significant issues that people have regarding privacy and the reasons they hold them; but believe them to be the price we all have to accept so that we can have the support and fellowship this BB provides. To overcome many of these issues would mean restricting access to this site significantly, and therefore reducing the ability for people affected by ichthyosis to access this avenue of support. I personally think its a good thing that this site comes up easily through google, maybe we just need to ensure that people realise what that means to them now and in the future.
The Founder of the worldwide Scouting Movement, Sir Robert Baden Powell was famous for his belief that we should all share our knowledge and experience with others. The idea being that future generations could learn from us, and therefore go further in their life. This site gives adults with ichthyosis that opportunity, and for that I am very grateful. It would've had a significant impact on my childhood and would've made my journey thus far much more enjoyable.