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#13039 - 11/12/06 03:27 AM Re: Increasing public awareness -- good or bad?
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
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.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#13040 - 11/12/06 07:21 PM Re: Increasing public awareness -- good or bad?
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
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.
_________________________
4 year old daughter with CIE

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#13041 - 11/12/06 11:38 PM Re: Increasing public awareness -- good or bad?
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
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).]

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#13042 - 11/13/06 12:35 AM Re: Increasing public awareness -- good or bad?
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
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.

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#13043 - 11/13/06 05:42 PM Re: Increasing public awareness -- good or bad?
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
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]http://www.ichthyosis.com/ubb/wink.gif[/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]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#13044 - 11/14/06 12:07 AM Re: Increasing public awareness -- good or bad?
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
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

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#13045 - 11/14/06 03:19 AM Re: Increasing public awareness -- good or bad?
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
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).]

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#13046 - 11/14/06 04:42 AM Re: Increasing public awareness -- good or bad?
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
I don't want to take this of sideshowbob's topic so...

"As you were"

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#13047 - 11/14/06 05:17 AM Re: Increasing public awareness -- good or bad?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
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]http://www.ichthyosis.com/ubb/wink.gif[/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
_________________________
Courtney
Mom to Julia

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