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Saysusie
04-10-2011, 11:48 AM
Dear WHL Family;
There are several ways that you can get banned from WHL and they are listed in the board rules. However, I wanted to discuss one way that will ensure a permanent ban from this site:
If you submit a post that, in any way, intimates that you have found, are the recipient of, know of, have possession of, a CURE for Lupus that does not include regular supervision by a medical doctor or the continuation of medical treatment and prescribed medication, then you will be immediately banned, for life, from WHL!
If you submit a post, making the above claims, and asking members to contact you, via your e-mail, so that you can peddle your supposed cure, you will be immediately banned, for life, from WHL.
If you berate, demean, or otherwise belittle a member of WHL who gives you a warning, who exposes your intent, or who requests that you discontinue or modify your approach, you will be immediately banned, for life, from WHL!

Now, let me explain my reasons:
WHL is a support group where we provide comfort, support, understanding, research, answers, and acceptance for anyone suffering from an auto-immune disorder.
This can be a very frightening disease which can, in its worst forms, still be fatal. It is a chronic disease, meaning that we may have some form of it for the remainder of our lives.
As such, many of us suffer greatly due to this disease and we often reach a point where we simply want our lives back, we want the disease to go away, and we want to be healthy again. In our efforts to do this, we are often willing to try almost anything that promises that it will accomplish this for us. Knowing of this possible desperation, there are those who claim that they know of a cure, that they've been cured, that their sister, cousin, mother, brother..whatever, has been cured. They also go so far as to claim that our current medications are poisoning us, that our doctors are liars and are only after our money, and that we (ourselves) want this disease because we are unwilling to try their proposed cures. These people are (as Rob so eloquently described them) 'Snake Oil Salesmen' and 'Charlatans'. People who prey upon the desperation of ill people in order to make money.
My daughter, who lost her life to Lupus, in her desperation while away at college, stopped taking her medications and tried one of these proposed cures. As a result, she suffered irreparable damage to her heart (which was being protected by the Prednisone that she abruptly stopped taking in order to try the remedy suggested by one of these Snake Oil Salesmen). A short time later, she lost her life when the damage to her heart caused her heart to just stop functioning entirely!
So, I am personally and vehemently against any of these people being allowed on WHL. I will not allow them to prey upon any family member here. WHL is here to offer protection and to be a safe place for each member. As such, Rob, Tgal, and I have formed a wall around each of you to shield you and to protect you from persons who do not comply with the founding principles of WHL!
Thank You All for all that you do in support of one another!

Peace and Blessings
Namaste
Saysusie

kim,l
04-10-2011, 04:37 PM
thankyou saysusie and rob an tgal we have enough problems with this disease without these so called snake oil salesman offering false hope especially to our young or new members you are always looking after us and i am greatfull hugs kim l

giggle
04-10-2011, 09:36 PM
I just had a go at an 'online doctor' the other day for suggesting he had the cure to lupus in a concoction of herbal remedy... and that all lupus was the direct result of an unhealthy GI tract and that being on his diet would be a cure...

I told him he was a horrible person, trying to line his own pockets by promising a cure to those who feel they have lost all hope.

Even in the most well meaning of circumstances, such words 'cure' and the suggestion their current medication is holding them back is DEADLY to people such as lupus patients. This was proven in a number of subsequent replies to his advertisement... one of which said "Wow I did not even know there was a cure for lupus and I didn't know it was caused by food etc etc" Who knows how many people ordered their 'cures' over the internet, dropped their carefully doctor regulated medications and decided merely eating right and taking herbs would suddenly cure their lupus.

Sorry for the rant... people like that really get me... even if they mean well (in the case of those who have mild lupus or lupus like symptoms and who get suckered into selling the product themselves truly believing in its prowess)... they need to consider the effect it may have on others lives if it isnt all its made out to be.

rob
04-10-2011, 10:28 PM
I just had a go at an 'online doctor' the other day for suggesting he had the cure to lupus in a concoction of herbal remedy... and that all lupus was the direct result of an unhealthy GI tract and that being on his diet would be a cure...

I told him he was a horrible person, trying to line his own pockets by promising a cure to those who feel they have lost all hope.

Even in the most well meaning of circumstances, such words 'cure' and the suggestion their current medication is holding them back is DEADLY to people such as lupus patients. This was proven in a number of subsequent replies to his advertisement... one of which said "Wow I did not even know there was a cure for lupus and I didn't know it was caused by food etc etc" Who knows how many people ordered their 'cures' over the internet, dropped their carefully doctor regulated medications and decided merely eating right and taking herbs would suddenly cure their lupus.

Sorry for the rant... people like that really get me... even if they mean well (in the case of those who have mild lupus or lupus like symptoms and who get suckered into selling the product themselves truly believing in its prowess)... they need to consider the effect it may have on others lives if it isnt all its made out to be.

No need to be sorry. You should read some of my own rants on this subject. These scumbags really disgust me. I've gone round and round with these people both here, and elsewhere on the net. For me, and I would imagine for most of us, the word "cure" is something we wish for, or pray for everyday. To take that word and twist its meaning into a marketing ploy pisses me off in a big way. But, don't worry, as Saysusie said, we have zero tolerance for these charlatans here, and they are indeed banned immediately, and permanently.

Rob

tiggerlishus - Heidi
04-11-2011, 03:27 AM
i just wanted to say a big thank you to saysusie, rob and tgal you our hero's i once got done over hook line and sinker with one these spending my money on a online book that was supose to give all the answers! obviously it didn't all that happen was out was out of pocket and had a big file of nonse on my computer! so anything to stop anyone else going thro is a huge relievement! xxx

hating_that_pred
04-11-2011, 03:28 AM
Well said.

No need for money loving wankers on here!
I'm incredibly sorry for your daughter, I had no idea.
You have my deepest sympathy.

WHL!

Nat
04-11-2011, 04:39 AM
I'm so glad I'm not the only one out there that is enraged by this. When I first got diagnosed my mum was reading any information about lupus she could and so much of what she was reading was people trying to convince other people that their lupus was "cured" by this magical diet or herbal remedy. I think my mum was hoping so bad that there could be a chance that I could get "over" this that she started talking to me about the diets etc. I had done much of my own research and quickly shot that down but these dodgy people preying on those who are in so much desperation to have their symptoms relieved just makes me so angry!
Anyway glad they wont be allowed around here!

Bonita
04-11-2011, 06:45 AM
Thank you all for looking out for all of us we appreciate your dedication and wisdom. Bonita

debbie-b
04-11-2011, 04:20 PM
Thank you for protecting us.
I know how to spot these " people" by now, but our newbies are still in danger, of falling for that crap.
Thanks to you guys, even the newbies don't have to worry, because you are here to fend off all the money hungry bas....s.
We love you guys.

Debbie

prothumos
09-27-2011, 01:10 PM
Obviously I'm really late to this post but being a "newbie" I was doing a lot of reading and I just had to comment. When I was first diagnosed with multiple autoimmune disorders my pastor and his wife (who I absolutely adore) gave me a book that maintained that lupus and other disorders could be "cured" by following a prescribed eating formula. I was sort of at a loss ~ this man/woman had/have been so good to me but yet I felt like they thought all there was to it was just to follow some whacky diet and bingo, you're cured. I've still got the book, it's collecting dust in my junk room, and when they asked, I just told them it made for interesting reading and let it go at that. I know they were well-intentioned but still........

Robin

Nonna
09-28-2011, 03:04 AM
Robin don't be sorry about a late post. It is always better to remind ourselves about these wackos. We need the reminder especially when we are in the dumps.

tgal
09-28-2011, 06:02 AM
Obviously I'm really late to this post but being a "newbie" I was doing a lot of reading and I just had to comment. When I was first diagnosed with multiple autoimmune disorders my pastor and his wife (who I absolutely adore) gave me a book that maintained that lupus and other disorders could be "cured" by following a prescribed eating formula. I was sort of at a loss ~ this man/woman had/have been so good to me but yet I felt like they thought all there was to it was just to follow some whacky diet and bingo, you're cured. I've still got the book, it's collecting dust in my junk room, and when they asked, I just told them it made for interesting reading and let it go at that. I know they were well-intentioned but still........

Robin

Aa Nonna said, don't be sorry. We believe there is really good information here and we are glad people are looking. On top of that, the posts that always stay at the top of each thread are called "sticky's". They never move because we believe the information in those threads is very important to everyone.

Just go on reading. No need for sorry

rob
02-27-2013, 08:00 AM
Bumped to the Top as a Reminder-