In order to join, you will need to register by going to LuPUS MB and click on Register. Your account will be validated usually within 24 hours. As we have had to change our server, when you enter the URL http://www.lupus-forums.org.uk in your browser, you will see http://www.lupus-support.org in the address bar of your browser. Please note that the LuPUS MB resides at a separate website from where you are reading this information. If you have any problems, you can contact me below:
Contact the LuPUSMB
You will then be sent a username and password which you will need to use to join the discussions and post messages. Please read carefully the GUIDELINES at the LuPUS MB. They can be found in the forum, "What is the LuPUS Message Board?"
This is to make certain the LuPUS Message Board and its forums are safe places to be to say what you feel and think without fearing you will be judged or reproached or isolated. The LuPUS Message Board belongs to you and to all who come here.
*No* offensive material.
LUpus Patients Understanding & Support (LUPUS) is not a business or commercial organisation. As such, we do not advertise or recommend products in the sense that we are paid to do so.
We do not receive funding from any organisation or business.
Our information and psychological support services to you are free. We rely solely on voluntary donations.
We do not hold any information about you on any computer.
All information is stored in a secure database on the webhost's server. Access is denied to all except to the Director and webmaster.
LUpus Patients Understanding & Support (LUPUS) does not observe your behaviour. We do not use or log any information about how you use the LuPUS MB.
LUpus Patients Understanding & Support (LUPUS) does not give or sell any information to any third party.
LUpus Patients Understanding & Support (LUPUS) takes your privacy seriously. We refuse to allow heath professionals or researchers access to the private forums. Despite our best efforts, "absolute security" does not exist on the internet, or anywhere else. Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to our site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access. We can monitor an IP address if there is a suspicion that the user is misusing or trying to hack and bring down our website. The IP address can be banned.
LUpus Patients Understanding & Support (LUPUS) recommends you to use a username and do not give out any private information on the LuPUS Message Board. Do not give your address, real address, phone number or even email address. You can use the Private Messaging (PM) facility to contact another member privately.
On the left hand frame, you will see Documentation -> Getting Started.
On the right, you will see at the top System Announcements where I may make some announcements. Underneath, you will see What is the LuPUS Message Board? and you can click on that and take a look!
Underneath, are all the forums so far. Diagnosis, Symptoms, Medication and Therapy, Emotional/Psychological are all forums about aspects of having lupus, lupus variant conditions and Hughes' (the antiphospholipid) Syndrome. The forum entitled Social and Personal is a forum which does not have any medical associations and you can talk about whatever you like. More recently I have added Teens with Lupus, for children, teenagers and their parents/guardians. Although Fibromyalgia is *not* an autoimmune disease, about 20% of lupus patients have the painful but benign condition and therefore, I feel this also ought to be included through suggestions received from the registered users of the LuPUS Message Board. I have also added a forum on Discoid Lupus, a skin condition which is different from systemic lupus erythematosus (SLE or lupus). Vasculitis is the most recent forum. You are welcome to make suggestions at anytime.
Please do not be afraid of posting or be afraid that you may cross over from one forum into another. It really does not matter because all these forums are about lupus and the people who have this diagnosis who live with family and friends who are affected by lupus.
When you have written your message, you will see at the end username and password. You must fill these in from the email sent to you. If you forget or lose your information, feel free to contact us again!
If you have any comments or suggestions, please go to the Contact, which can be found under Utilities in the left frame and you can email one of the Moderators.
LuPUS Message Board
When you reach the LuPUS Message Board, go to the "What is the LuPUS Message Board" forum and Read the following before Registering: What is the LuPUS Message Board