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Moyamoya.com Code of Ethics (Read 19465 times)
DJ
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Moyamoya.com Code of Ethics
Jul 1st, 2008 at 7:13pm
 
Let me try to explain to you what my feelings are about being the creator/webmaster of Moyamoya.com.  It may give you some insight as to why I make some of the decisions I make regarding what is posted on the board.  I’ve never posted my “code of ethics”; maybe this should be it…

1.  I feel it is Moyamoya.com’s inherent responsibility and moral obligation to ensure valid, factual, accurate, life-saving information is available to Moyamoya sufferers and their families, QUICKLY and easily, 24 hours a day – 365 days a year.

2.  It is the mission of Moyamoya.com to provide a place of support, aid, and assistance to sufferers, et al after they have found the site and would like to inquire more about treatments and other people’s opinions and experiences.  More importantly, it’s to offer the family that first finds this site in the middle of the night after a loved one has been diagnosed RAPID RESPONSE to credible, validated, factual  information that may save the life of themselves, or that of their loved one.

3.  Polls - I do not believe, in good conscience, Moyamoya.com can allow non-scientific, “what-if” efforts to combine symptoms of people on the board as a basis for someone new to make possibly a life or death decision on, albeit in a “poll” or any other type of “quick reference”.

4.  I believe there is ONE form of treatment for Moyamoya Disease (MMD); surgery.

5.  I believe, as the webmaster of Moyamoya.com, I would be providing grave injustice to the people who find this site if I did not point them in the direction of a skilled, experienced medical staff that specializes in the surgical treatment of MMD.

6.  I do not believe in the “wait and see” form of treatment, unless, of course, there are circumstances deemed necessary to do so by an experienced medical staff.  And I certainly cannot support a study where the goal is to determine if people with MMD are at greater risk of stroke over a five year period.

I don’t take responsibility for the direction of the site once a month, when I stop by to see how the site is going, or once every six months when I stop by to wish someone a Happy Birthday… I have accepted the responsibility every minute of every single day for the past 8 ½ years and will continue to do so until I am physically or mentally unable.

Some of you agree with how I handle things, some of you don’t.  I hope you all agree this site has done at least some good in a lot of lives.

DJ
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« Last Edit: Jun 29th, 2011 at 7:33am by DJ »  

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Re: Moyamoya.com Code of Ethics
Reply #1 - Jul 1st, 2008 at 8:43pm
 
Hi DJ

I am the person you are trying to reach.  I was thrown a total curve ball when I was given the diagnosis of MMD just a week or so ago... and I turned to this site and to all the people on here for support, advice and encouragement at one of the scariest times in my life.

Because of what I have learnt here, within less than a month after diagnosis, I will be having surgery, and my life will be saved and my little girl will continue to have the mother she needs and deserves.

All the work that you put into this site, and all the people who contribute in such a positive and encouraging way, have saved my life.  If I had listened to my neurologist - he told me to just get on with my life, not wrap myself in cotton wool, my case of MMD is just mild, and that surgery is just "experimental".

Thank you, from the bottom of my heart, for all you do.  I know it must seem frustrating at times, but it is sooooo worth it.

God bless all of you

Kylie
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Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!
 
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Re: Moyamoya.com Code of Ethics
Reply #2 - Jul 1st, 2008 at 8:58pm
 
DJ

I agree with Kylie.  When my daughter was diagnosed last October and we were told to wait and see if she have another stroke or more seizures I didn't know where to turn.  I found this site and started asking questions and was urged to get a second opinion.  I sent her films to Dr Steinberg against the advise of her neurologist and was told that she definately needed surgery.  While waiting for the medicaid to approve payment she has new symptoms.  She had another MRI and the neurologist agreed she needed surgery, there had been that much change in 3 months.  In April she had surgery and is doing wonderfully.  She also has Down Syndrome so she really can't tell me the difference in how she feels but she knows she feels better.  I thank you and the Lord for this site.  I too feel this site saved her life or at least the quality of her life.

Thank you so much,

Margaret
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Margaret
 
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Shan
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Re: Moyamoya.com Code of Ethics
Reply #3 - Jul 1st, 2008 at 9:34pm
 

Aloha DJ,

Appreciate you posting your "code of ethics" above.  I believe it gives the group a better understanding of why you make the decisions you do regarding this site.

I am sure there are many more like Kylie whose lives have been affected and saved because they found this site.  I remember when I found this site; it was a feeling of excitement--like "EUREKA!"--as if I discovered electricity or something!  ;Grin  I wasn't pleased to see that there were others like me, but I felt comforted to know that there are others that have and were experiencing what I was.  I guess you could say I wasn't as scared knowing I wasn’t going this alone…

I agree that we should try our best to provide Quote:
"credible, validated, factual information"
as best and as much as possible (even though there may be limited amount of "formal" info out there on MM).  That being said, my personal opinion is that if we are not quoting a medical paper, or factual medical documentation, then everything else we post here is merely our own opinion,  info we received from our doctors or through our own research, personal testimony or experience (whether our own or of a loved one).

Therefore, even if you or I believed that there are only 2 MM experts in the U.S. that would merely be our opinion.  We can express our feelings on this site, others can comment on it, but at the end of the day, it is truly our own opinion (unless we can back it up with proven medical facts).  

As the administrator, please know that I respect all you have done for us.  I am just concerned that if one of your members happens to have a view that differs from yours (or some of the other members), do you consider yourself doing “injustice" by allowing them to express their views/opinions?  Will you not allow the member to post a thread which includes an opinion that doesn't agree with your beliefs regarding MM?   Smiley

Quote:
"I believe that 99.9% of the population is capable of making an informed decision on how they want to proceed with MMD given the current information on, and linked to, from moyamoya.com without demanding to know what percentage of people had a hangnail on their right index finger prior to surgery prior to making a decision.  It’s ridiculous."


As you mentioned above, you believe that “99.9% of the population is capable of making an informed decision on how they want to proceed with MMD given the current information on, and linked to, from moyamoya.com”....

Therefore, I say have an "open" forum/dialogue where members won't be afraid of the repercussions of posting a thread regarding their concerns/inquiries that you and/or some of the other members may not agree with.

I believe in order to provide a "well-rounded" discussion and support forum, aside from foul language and non-MM topics, members should feel comfortable in posting any question/thread on this site.  Whether we agree with the author or not, we have the choice to respond or not respond.  A new member can read through the thread, read through the replies and make an "informed decision" from there...
What's so great about support groups is that others are able to share their experiences and stories and offer words of encouragement, warnings, hope, etc.

I understand that communicating via text/email messaging such as this can be taken out of context--so please know that I am merely expressing my opinion and wish the best for everyone. One thing that this so-called “rare” disease has brought me is…humility…and how thankful we are for each and every day. Smiley

Take care,
Shan

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« Last Edit: Jul 1st, 2008 at 9:41pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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Re: Moyamoya.com Code of Ethics
Reply #4 - Jul 1st, 2008 at 10:22pm
 
I have to say, I’ve been an active member here since the second week this website was created, and in all that time, every single member or guest has been allowed their opinion and was able to express their views, whether it was in DJ’s code of ethics or not, and believe me, I’ve seen some real “off the wall” stuff over the years. Unfortunately there are a few members here that aren’t seeing the bigger picture. The true facts are, DJ has NEVER EVER in all the years I’ve been here, not allowed someone to express there views, he ONLY steps in when it gets out of hand and can hurt the MM community as a whole. As Webmaster, there are times he has to make decisions that are best for the “entire” MM community, not just for one person. Some will never see that, but it’s sad when a man who has given us life saving resources, and saved countless lives because of HIS website, has to have his integrity questioned on the open boards. His website speaks for itself. IMO, he should be shown the respect he deserves!

Smiley

Mar
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Kath41
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Re: Moyamoya.com Code of Ethics
Reply #5 - Jul 1st, 2008 at 11:23pm
 
DJ,
I am eternally grateful for your web site, had I not found it there is no question in my mind that I would be dead  The neurologist that was treating me knew NOTHING about moya moya other than what he had read in a medical journal,  this he photo copied for me to read but offered me no real answers as to what to do, after reading what he gave me and I kept seeing "...in the pathology report" only then did I realize I had to do more investigating because I did not want to be "another pathology report".  Thanks to your web site and the links provided to Dr. Steinberg I am still around today...THANK YOU, THANK YOU, THANK YOU!!!!
It is a shame that because of some recent postings you have to justify yourself, please know that the members  here respect you and I am sure they are just as grateful for this web site as I am.
Thank god for you and the knowledge you have provided.
Your Friend,
Kathleen
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tiomasai
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Re: Moyamoya.com Code of Ethics
Reply #6 - Jul 1st, 2008 at 11:42pm
 
I originally didn't plan to post but I would like to address some things since we are being allowed to express our views - ALL OF US. 

As I mentioned to DJ personally already, I'm not sure why there seems to be a justification of his position.  Most of us here already know it's HIS website, not OURS.  I for one am not questioning his integrity for that matter either.  I'm not sure others' integrity should be questioned either, simply for providing an opinion. 

I'm not talking about the opinions about treating moyamoya.  I'm talking about how the opinions are provided. 

As an example, let me put it this way:

For some, Mar's posting here could be considered bullying.  It can be read as someone saying 'believe what I believe or buzz off'.  I don't read it that way -- I know some of what Mar's family has gone through, and if it wasn't for DJ, who knows where Mandy would be today.  I understand how she feels about DJ and I respect that (as I've told Mar before, how she feels about DJ is how I feel about my mom - she saved my life).  At the same time, if I disagree with him is that questioning his integrity or showing him disrespect?  I don't think so.  Unless I call him names and am never grateful.  Which I've never done or been. 

I also respectfully don't agree that everyone's view point has been allowed. Even when DJ allows a post to stay, some people become so hostile that the receiving end of the hostilities back way or inflame back, only to have the message lost in the crossing. 

Bottom line, I don't feel that everyone is being "cordial" or "supportive" often because we don't believe what is believed by the majority of this website.  Oddly, I say this even though I think I'm in the majority camp, and agree with many of DJ's stances above.   I think this is very evident from all my posts as a fellow Moyamoya patient myself. 

I don't say all this to be hostile.  I say that as a full member of HIS website.  As Kieu has stated, we're like family.  We don't all have to like each other, we may infight but at the end of the day, we all have the same purpose.  We may disagree how we get to that purpose, and we understand there is only one administrator, but that shouldn't stop us from disagreeing.  CIVILLY. 

My 1 cent,
Trina
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DJ
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Re: Moyamoya.com Code of Ethics
Reply #7 - Jul 2nd, 2008 at 3:17pm
 
I'm not trying to "justify" my position by posting the Code of Ethics.  It's something I should have done years ago and never accomplished.

Shan - I believe the "open" forum/dialogue you mention is an invitation for a medical "free-for-all".  I used the following reference in an email previously and it makes sense to post it here...

"…if someone posted “I cured my Moyamoya by drinking 2 gallons of Drano and you should try the same thing”; certainly you agree that information could be potentially dangerous to new visitors and it would probably be best that someone in a desperate state of mind not be subjected to such an idea?  If so, that means you have to “draw the line” somewhere… who makes the decision on exactly where to draw the line, and at what cost?  If you don’t believe something potentially dangerous to someone’s health/life should be removed, I affirm there is no way you can possibly understand the responsibility of running a website."

As for people posting different opinions - I am absolutely all for it!  Most of the information here has come from people posting.  I think my track record of not deleting posts speaks for itself.  All I ask is that posts don’t infringe on any of the statements in the Code of Ethics and the Netiquette page everyone should be familiar with (linked to on the main menu).  http://www.moyamoya.com/netiquette.html

As for anything else... you can't please all of the people all of the time.

DJ
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Adversity does not build character... it reveals it...  I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!
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Shan
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Re: Moyamoya.com Code of Ethics
Reply #8 - Jul 2nd, 2008 at 4:47pm
 
Aloha DJ,

I understand your response above and appreciate you taking the time to reply.  The open forum/dialogue I previously mentioned didn't particularly pertain to a "medical free-for-all."  I guess I wasn't able to express my thoughts clearly~ What I meant was along the lines of what Trina mentioned.. Quote:
...everyone's view point has been allowed. Even when DJ allows a post to stay, some people become so hostile that the receiving end of the hostilities back way or inflame back, only to have the message lost in the crossing.

I guess I meant "open mind" to other's opinions...

As for the example you posted above regarding the "Drano"--- I believe if someone did post it, although we may know it is absolutely absurd and incorrect, I personally feel you should leave that post/thread and allow others to respond to it.  What if it is a "myth" that new MM's have "heard through the grapevine?"  At least they could come to this site, read through the blogs, and hopefully someone would've challenged the poster to provide medical evidence that "Drano" worked.  Embarrassed

We never know what the mindset of members are when they are posting their questions/thread.  We don't know, nor can we judge, if they are being malicious or truly sincere in seeking information about MM.  But why take the chance of denying someone the opportunity to post their question--just in case they are truly seeking to find out if anyone knows anything about their topic?
Also, by calling them names, or responding disrespectfully because we don't agree with their opinion only shows our true colors  Undecided and may drive people away.  Again, we don't know what the members are able of comprehending, if they have a learning disability or if they are in denial.  All that doesn't matter--we should be able to provide, if we're able, the "support" they have come to seek on this site.

Remember what we were taught as kids?  "If we can't say anything nice...we shouldn't say anything at all?"  Wink

Last but not least, if I failed to mention it before, I don't envy your position as the administrator.  "It's a tough job, but somebody's gotta' do it  Wink"  Mahalo Nui Loa for this site and putting MMians in touch with other MMians!  ;Grin\

Take care,
Shan
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« Last Edit: Jul 2nd, 2008 at 4:48pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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Re: Moyamoya.com Code of Ethics
Reply #9 - Jul 3rd, 2008 at 12:17am
 
I remember when doctor told me in hospital ER on 1/12/06 that I have moyamoya diease, my 1st words to him was don't joke with me doctor, he said that no, you are in serious trouble. They kept me in hos. for a week, I was not worry, have no clue what that was, and think I will be fine, it only hit me when my husband sat me down at home and explain to me what moyamoya is and I cried.  He also found this web site and told me to check it out, and I did, it is warm feeling of welcome to moyamoya family from you guys who is walked on this path before me, thank you so much for be there when I needed. And DJ, there are not enought words for me to tell you thank you, this web site is mean alot to me, because of it I learn more about moyamoya, understand exactly what kind of diease I dealed with, to learn how to choose doctor, and also found true friends, and known I'm not alone on this word with the diease name like a drink in Hawaii Cheesy

DJ, I'm deeply appreciated and respected you, no doubt about that, and I know that being web master, you have to take full responsibility, so I understand if you take out or block to those who have no respect to other, bad words, threaten,etc...
You kindly created this site so people like me come in here to look for support, and also I would like to give back my opinion, or what going on with me on moyamoya jouney, (the life after surgery) or just offer support to those new member who just like me 2 and 1/2 years ago,
Like Trina said: Bottom line, I don't feel that everyone is being "cordial" or "supportive" often because we don't believe what is believed by the majority of this website.  Oddly, I say this even though I think I'm in the majority camp, and agree with many of DJ's stances above.   I think this is very evident from all my posts as a fellow Moyamoya patient myself.   

DJ, I do argee with Trina on that and with Shan on her post, and like you said in "code of ethics" line # 2,  It is the mission of Moyamoya.com to provide a place of support, aid, and assistance to sufferers, et al after they have found the site and would like to inquire more about treatments and other people’s opinions and experiences.  More importantly, it’s to offer the family that first finds this site in the middle of the night after a loved one has been diagnosed RAPID RESPONSE to credible, validated, factual  information that may save the life of themselves, or that of their loved one.

Then why do we judge other opinion?

Kieu
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Re: Moyamoya.com Code of Ethics
Reply #10 - Aug 14th, 2008 at 9:28pm
 
And Kieu......let me first start.....by saying YOU are one of my dear friends here on the site!  Wink

And like Kieu....this site was here for me when I first got my diagnosis. I am not into the politics of things here....so I will let you all work that out "LOL" .....but, we are FAMILY in a wonderful, occluded kind of way!

Most of us are regular people without any real medical background. We are here helping each other with a rare disease that most in the medical field have little or no knowledge about!

I had my surgery with Dr Steinburg and the team at Stanford, Aug 2006. 
(he is a fantastic surgeon and currently DOES have the most surgical experience in the USA and that is a fact.) 

There ARE other competent Neurosurgeons in the country (some even trained under Dr Steinburg) and more are in the works...thank God. However, there are also many that lack the case volume and experience that I would want for myself or my child. Let's put it this way....if you were considering a lasik eye surgery....would you want to be the doctors 3rd patient? Now think about an extremely critical micro brain surgery.

I am currently being followed by Dr Anthony Furlan (a world class neurologist by all standards....he was head of Neurology/Cleveland Clinic for many years and is now head of Neurology at the University Hospital in Cleveland) He is not a Neurosurgeon....but he is a fantastic, well qualified Neurologist. Dr Rassmusen of Cleveland Clinic was the Neurosurgeon we consulted at CC for surgery and he was also quite capable and highly respected & suggested the very same game plan for me as Stanford...however because at that time (2 yrs ago) he had only done about 2 dozen surgeries for MM....I chose to go to Stanford.

The Neurosurgeon at the University Hospital suggested a  6 month "wait-and-see" approach and was therefore scratched off our short list immediately. (FYI: he had only done 8 prior surgeries for MM in the last decade)

After my successful surgeries were completed at Stanford, I gave copies of the surgical reports to Dr Furlan who said "based on the severity of the post surgical findings, we were absolutely correct in rushing to surgery" 

My journey and choices made...were my personal ones.

I thank God for this site and it's members....as they were around for me when I needed them most.

I am so frustrated when I still hear new people are being dx'd with MM and are being told  "let's wait and watch you"....till when? After a catastrophic stroke...."only" then they will be worthy of surgery??

If you are compromised by a major stroke....the surgery will not help you get back to "pre-stroke" condition.

smiles....Diane : )

Oh....and for the record...my husband is a physician at the University Hospital.....and we refused the surgeon & surgery at his own hospital!
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Hmmm....seems I'm kinda "special" LOL
 
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Reply #11 - Sep 28th, 2008 at 10:25pm
 
HI All, I'm Irene Leicht from Houston Texas. I am a survivor of Moya Moya, it has taken me almost a year, First surgery Oct 30, Second November 7th 2007. Kim  Tiller is my life sister as we had the second surgery together. I met with DJ who was in Palo Alto while I was there. It has taken me 10 months to be even able, emotionally to even enter this sight.  I had panic attacks and depression. It has not been easy but I finally feel like i can breath again. I'm thankful to DJ and Kim. Dr. Steinberg saved my life which I'm finally living again.
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Re: Moyamoya.com Code of Ethics
Reply #12 - Sep 28th, 2008 at 11:34pm
 
Hi Sis!
What a joy to see your post! First because it's good to know that all is well there is Houston after that frightening hurricane and second because you did it - you posted. You're a dear friend Irene, meeting you was the best thing that came out of this whole "moyamoya thing". We're due a nice long chat. I'll call soon.
Love and hugs,
Kim Kiss
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Re: Moyamoya.com Code of Ethics
Reply #13 - Sep 29th, 2008 at 7:49am
 
Hey Kim, Love you lots----We're all fine and so are we right? Miss you lots and will talk soon. Irene
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Re: Moyamoya.com Code of Ethics
Reply #14 - Sep 29th, 2008 at 11:38am
 
Hi Irene!

Sooooooo good to see you here!  I've been thinking of you, hoping that all was o.k. with you and your family.  Welcome back to your life, and I hope to speak with you sometime soon!

Smiley Jill
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Re: Moyamoya.com Code of Ethics
Reply #15 - Sep 30th, 2008 at 1:29am
 
Irene~

Glad you're finally doing better.
Three cheers for that.
Having been affected my mm, then going thru surgery and recovering does take a long time.

Was great seeing you and your husband up at Langley.
I'm very glad we met, but am sorry we didn't get to chat more. Mostly my being 'shyish'.

We have some photos that will send along at some point.....

This is an interesting board... lots of information, opinions, HELP and SUPPORT.


Jack sends HELLOS to you and your husband.

Linda
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Linda (LA)
 
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Re: Moyamoya.com Code of Ethics
Reply #16 - Oct 15th, 2008 at 1:12am
 
This is a great site that you started. Although my mom passed away... this site at least pointed me in the right direction as far as trying to find her help.
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