Increasing public awareness -- good or bad?

Posted by: sideshowbob

Increasing public awareness -- good or bad? - 11/10/06 03:55 AM

Ok, here is the thing. I have this blog that, um, is kind of popular, and reaches a pretty wide audience. I've been on hiatus for a while, and am about to start writing again. So far, I haven't mentioned our daughter's ichthyosis, mainly out of respect for all of you. If I link to FIRST and this site, and start discussing what I go through with our daughter, then traffic to this forum will increase. That means total strangers with no connection to Ichthyosis lurking around, reading our forum, looking at pictures of our kids. It also means raising awareness of ichthyosis and presenting it in a positive light.

What are your thoughts on this?
Posted by: Angel24755

Re: Increasing public awareness -- good or bad? - 11/10/06 02:40 PM

I also have a blog and when I am talking about Ichthyosis, I only link to FIRST. I think there is something to be said for awareness but I also think that privacy is important. That is the very reason that the pictures of my children never stay on this board very long. [img][/img] Personally, I want people to know more about Ichthyosis but at the same time, I don't want them to know ALL about my life. That's why I only link to FIRST.

[This message has been edited by Angel24755 (edited November 10, 2006).]
Posted by: LauraAnn

Re: Increasing public awareness -- good or bad? - 11/10/06 03:05 PM

Personally, linking to this BB I think isn't that great an idea, but linking to FIRST is a great idea. I linked to FIRST on a blog I have.
Posted by: CShell

Re: Increasing public awareness -- good or bad? - 11/10/06 08:13 PM

I always give out the link to FIRST to people, not so much this BB because people can be educated without overstepping privacy limits. [img][/img]
Posted by: sideshowbob

Re: Increasing public awareness -- good or bad? - 11/10/06 08:27 PM

This site is linked through the F.I.R.S.T. site. Also, if people google "ichthyosis", this is the first site that pops up. So my question is how concerned are you about people finding and reading this site?
Posted by: Angel24755

Re: Increasing public awareness -- good or bad? - 11/10/06 08:50 PM

For the most part, if people are interested in learning about Ichthyosis and you give them the link to FIRST, they will browse around a bit and leave. They aren't going to be looking for a link to this BB. The FIRST site will answer most of their questions and they probably won't google Ichthyosis to learn anything more. However, if you link to this site, it is just handing the BB to them. Nothing on the internet is private...nothing...which is why I am very aware of what I post on here. (Also the reason that I remove my kids pictures after most people here have had a chance to see them.) However, I don't really want to make it easy for people to get here either. KWIM?
Posted by: Anonymous

Re: Increasing public awareness -- good or bad? - 11/10/06 10:19 PM

WEll I really dont like the thought of strangers seeing my daughter pics. However I feel the people on here are not strangers But I dont think total wierdos will be looking at a Ichthyosis website. Not saying they cant but dont think they will do research on something no 1 knows about.
Posted by: threerxli

Re: Increasing public awareness -- good or bad? - 11/10/06 10:45 PM

We have had (me personally and others) some attacks, or emails sent that were obviously young teens etc. Or harrassing posts. I think that when you type in DRY SKIN it also sometimes shows this site,for even people that cannot spell ichthyosis. The moderators are usually great at getting them out of here fast. But your point is very valid, bits and piece of information can be put together to make a complete picture of your location and of course your childrens too. It is not necessarily the people that are posting that we have to worry about, as much as the lurkers. Maybe we as a group could leave names out, at least last names when possible, and disclose personal information only by phone or private email. I know that personally I talk to 12 people from this site on the phone or through email often, and probably another 10 through chat or instant messenger. The good news about this site is that it has helped so many more people than it has hurt, but I completely understand your position and concern sideshowbob. And like Angel said, I delete old posts and information that I realize says too much. I would not mind you linking this site to the blog, I think that the more people that understand ichthyosis, the better chance we all have to raise awareness and get more research, more donations and better medical care. Possibly a cure.
Posted by: CShell

Re: Increasing public awareness -- good or bad? - 11/11/06 12:53 AM

I'm an administrator on a military wives support website, and the military gives wives and sites like that guidelines called OPSEC. I'm going to post our particular OPSEC guidelines, ignore those that specifically have to do with the military, but they're some good tips for ANY public forum, not just this one. [img][/img]


Anyone who is affiliated with the military is required to ensure that their actions do not compromise the various operations of the military community. Information which is required for you or your spouse to perform assigned duties should not be shared or discussed where members who do not have a need to know can over hear that information.

Such breaches have the potential to compromise the success or security of military operations and personnel. Each member (or family member) must take precautions to avoid the intentional or UN-intentional disclosure of such information.

The following items are just a few tips to help you prevent an OPSEC violation.

* DO NOT give out names of personnel who are deploying

* DO NOT give out ANY personal information of any person INCLUDING yourself. This inlcudes last names, addresses, telephone numbers, etc on a public forum, website, etc

* DO NOT give out specific date of troop movements

* DO NOT give out number/location of aircrews or members deployed.

* DO NOT give out number/locations of equipment/aircraft/personnel.

* DO NOT give out senior officer locations.

* When someone tells you information that you do not need to know tell them they are violating OPSEC and you don't want to hear it.

* When you hear rumors about missions or operations of any kind that are supposed to be going on, don't repeat the rumor, just ignore it.

Remember it's our loved ones putting their lives on the line to defend the freedom and liberty we all enjoy, don't place them in greater danger by violating OPSEC.

If any newspaper approaches you or television media personnel please tell them you cannot speak to them and refer them to the military public affairs office.

The rules of OPSEC also apply to telephone conversation and e-mail transmissions. Please be VERY careful of the information you give through these channels. Even if it appears to be secure, you never know who may be monitoring you without your knowledge.

Our enemy took us by surprise and we will never be the same country again. In order to effectively bring the enemy to justice, we need to maintain the element of surprise. Every element of our operation is more sensitive than ever before. We must rededicate ourselves to our mission and our country to help ensure that what transpired on September 11th will not be repeated. Security must be incorporated into every aspect of our jobs. If we are not vigilant in protecting critical information, it will happen again. The future of America depends on changing the way we look at security. OPSEC can make the difference.

It is absolutely essential that it be understood and incorporated into everything we do.
Posted by: threerxli

Re: Increasing public awareness -- good or bad? - 11/11/06 10:48 PM

You forgot to use a secure line when speaking. No cell phones or cordless phones. Scanners and the old MARS station (they tore that down) but scanners still pick up signals clear as day.
Posted by: Promiseland_dup1

Re: Increasing public awareness -- good or bad? - 11/12/06 03:27 AM

In addition, sideshowbob, you should also think about the issue of your daughter's privacy. It may not be an issue if she is extremely young. But if she is older, you may want to talk with her and get her blessing before proceeding with the revelation.

On a related issue about pictures that others have brought up ... This forum and website is open to everybody. When pictures of children are posted, they serve a constructive and supportive purpose for everyone that is part of the ich community.
However, I am always aware that people from outside the community could also appropriate the pictures for bad purposes. I am not sure what should or could be done to minimize this risk.
Posted by: sideshowbob

Re: Increasing public awareness -- good or bad? - 11/12/06 07:21 PM

I agree wholeheartedly on the issue of child privacy. I don't use my real name on my blog, and don't post pictures of myself or my child. I've never posted my name or my child's name on this forum precisely because I am concerned about her privacy.

When we first brought her home, I told no one outside of our family about her ichthyosis. When asked questions, even by very good friends, I told people she had severe eczema and left it at that. After reading this forum for a while, I realized that I was doing her and the community a disservice by not talking about LI. I don't want her to grow up feeling that it is something to be embarrassed by or ashamed to have.

I am thinking about doing a general educational post about ichthyosis, talking about what we go through as parents of kids with this condition, and linking to the F.I.R.S.T. website. Is that agreeable to the majority of you, or would you prefer that I not write about the condition at all? I want to respect the community, and am amenable to whatever you all decide.
Posted by: gryphon

Re: Increasing public awareness -- good or bad? - 11/12/06 11:38 PM

Although I prefer that this particular BB not be publicized outside the ich-community, I am in full favour of a greater general awareness of ichthyosis and encourage anyone to offer information about ich in any appropriate public or private setting, including blogs.

However, given that we are discussing privacy issues, I would like to give my opinion on the posting of children's full names.

I personally don't want to be a poster-boy for a medical condition or have my name associated with a medical condition every time *my name* is googled. As such, like many others here, I am very particular about not disclosing personal details whenever posting.

In my own situation, political statements I made over ten years ago on the Net remain accessible to this day. I work in a field where political leanings have a bearing on how professional contacts perceive me. Whilst I would like to disassociate myself from this same information that I disclosed in the past, I cannot, as there is a relative "permanence" to some archived sources on the Net.

There is the possibility of similar "permanence" when disclosing the full names of the children on public forums such as this BB. If a doctor were to publicly release medical details of a child, a parent would denounce the breach of confidentiality and privilege. Yet it is easy to forget that by attaching a child's name to discussions here when disclosing medical specifics often in far greater detail and in much more colloquial terms than any medical file, the child's medical details are similarly made part of the public domain. It is difficult to predict how such personal and private information may impact on future circumstances in that child's life. In years to come, anyone from a schoolyard bully to a business associate could possibly have access to this information.

To further stress how internet investigations are increasingly become routine practice, when my current employer looks into the background of an individual, investigators will go as far as searching profiles on MySpace.

I am not being critical of anyone or aiming to cause worry. Many adults willing disclose their names here and are quite comfortable doing so. It's a personal choice. But being someone who is not comfortable with all and sundry having access to my medical specifics, I feel compelled to raise the privacy issues related to publicly disclosing a child's full name in relations to medical details on some internet sites.

[This message has been edited by gryphon (edited November 12, 2006).]
Posted by: Kotick

Re: Increasing public awareness -- good or bad? - 11/13/06 12:35 AM

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.
Posted by: gryphon

Re: Increasing public awareness -- good or bad? - 11/13/06 05:42 PM

I hope my post didn't come off as overly passionate. I tend to be a bit of a privacy pitbull. You all should see the personal shredder I carry around strapped to my belt. [img][/img]

Jeff, I sorta recall you mentioning Lord Baden-Powell in a previous post as well. I was a Wolf Cub as a boy but never continued to the Scouts. I'll howl a "Dyb, Dyb, Dyb, Dyb, Weeell, Dob, Dob, Dob, Dob" just in case you were one as well. [img][/img]
Posted by: Kotick

Re: Increasing public awareness -- good or bad? - 11/14/06 12:07 AM

I was in the Scout Movement from 10 years of age until I was 26. So of my fondest memories are from Scouting events. I note that by carrying around your shredder you are living by the motto "Be Prepared" hehehe
Posted by: gryphon

Re: Increasing public awareness -- good or bad? - 11/14/06 03:19 AM

16 years. I'm impressed by your commitment. I was a Cub Scout for only two years but also formed very fond memories from Scouting.

The main reason I quit was my ich. I really did not have a firm grasp on properly caring for my skin at that time. As a consequence, the twice-yearly camping trips were very trying for me. Winter camp in Canada was tough on my skin. While summer camp weather was much kinder, I was always self-conscious about having to lotion-up, apart from the other boys, after the frequent water activites. Back in the 70's, camp facilities were also much more rudimentary so bathing and skin care was not easy for a 8-year old with ich. That's why I admire your dedication. But "Cubs" played a significant role in building my young confidence and character. I'd recommend Scouting as something to consider to any parent.

[This message has been edited by gryphon (edited November 13, 2006).]
Posted by: gryphon

Re: Increasing public awareness -- good or bad? - 11/14/06 04:42 AM

I don't want to take this of sideshowbob's topic so...

"As you were"
Posted by: CShell

Re: Increasing public awareness -- good or bad? - 11/14/06 05:17 AM

I try my best to be discrete and cautious about what I post, not only because of privacy issues at hand, but because my husband and I have to sort of follow this "code of conduct" for the job he holds in the military.

However, I do think it's incredibly important that the public be made aware of ichthyosis, and that the parents and people who are affected by ichthyosis directly have an avenue of support and reflection and comparison. I chat with another mom who's child has Netherton's, and I can't tell you how amazingly helpful and relieving it was to see pictures of her daughter - and that goes for any other pictures of people with NS I've been sent or came across. Having no experience previously with Netherton's, and it being a VERY hard thing to google unless you have an MD (try looking it up - only medical articles! lol), I'd like to think that maybe a new mom with a kid with NS might come across Julia's pictures or the posts I make about her, and realize they CAN and DO have happy, fullfilling lives, and do just about everything other kids do.

Now, I'm a realist as well, and know there are a bunch of perverts and ill-intended people out there. And you can be sure that if I ever come across someone who used Julia's picture for anything BUT education OR "oh my gosh how cute is this kid!", they'll be sued until they have nothing but a cardboard box to live in for defamation and any other illegal thing our Army lawyer can come up with [img][/img] And for those I don't see doing it - well, I can't really help that. And while it bothers me that someone WOULD do that, it bothers me more that a parent or person with NS might be more confused and scared or alienated because they can't find the support they're looking for and need.

I don't necessarily want Julia to be a poster girl for NS - though I know lots of military wives and other people all across America who associate NS with Julia, just from the Bike Tour my friends did, the garage sale one of my other friends did to support FIRST, the information my friends give out to people, yada yada...I don't think it's a bad thing either. I sort of feel like - one more person who knows about it, is one less person who will ask Julia an infuriating or embarrassing or just plain annoying question in the future.

Boy I wish we could raise enough money to make a TV commercial in prime time TV! lol