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Welcome to the The AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW Website.
The purpose of this site is to inform the public, sufferers and their families about Adhesive Arachnoiditis.
The main purpose of our website is to provide help and information about Adhesive Arachnoiditis to the general public and Arachnoiditis sufferers. This website will grow as more information is added in the future and hopefully report any research and news that may be of interest to other sufferers.
A secondary purpose is to provide a forum for support so fellow sufferers can post information and news about the problems they face living with Arachnoiditis.
If you know anyone who has had a myelogram, oil based, (Myodil) or water based and has chronic pain, restless legs symptoms, unexplained pain and can not get a diagnosis from the doctor to what the symptoms are please call one of the committee we may be able to help by talking to you or your family member or friend and by realizing you are not alone with debilitating pain that alone is a great comfort to many. We are a support group, there to support each other, make friends and understand each other's pain.
We have going five years now and I had wanted to start up an association to find other people with the same disease I had and the association has just grown and grown with phone calls and emails from all over the world, people desperate for help or to compare symptoms and that it is not all in their head, as we all know our friends and relatives can be sympathetic but you have to have the disease to understand what we are going through and there seem to be so many phases to it and the scary part is that there is no cure and no one caring about finding one, or are they just waiting till we are all dead. They will have a long wait. I have people who are only in their mid thirties calling me.
My main object for this Association is to find the people out there who are suffering from this debilitating disease Adhesive Arachnoiditis and do not know what is wrong with them and can not get an honest answer from their specialists who have taken an oath to look after the sick and yet they avoid telling us what is wrong with us. I know there is no cure but to have someone there who is an expert who can help you through this chronic pain that no human being should have to suffer, We were not told of the consequences of this terrible dye and every day one of our sufferers contemplate suicide, they have lost their families, they can not work and live in a life of hell trying to struggle on a pension. Is there no one out there who will help us and be honest with us, specialists that we thought we could trust and put our lives in their hands and now they want nothing to do with us. Without our G.P's and Pain Management Specialist's we would be lost with this chronic pain and no one to help us cope with it.
We are a non-profit volunteer self help group, registered with the Department of Fair Trading, and have an ABN and taxation number. We are excempt from tax and are eligible with the taxation dept for gifts and donation.
This Association is not just for sufferers of Adhesive Arachnoiditis but for their families, friends. carers who go through this with us and anyone suffering chronic pain who would like to come along, listen to the meeting, have a chat and make friends. Any able bodied person who would like to donate some of their time are more than welcome. The more we grow the more help we need.
A SHORT EXPLANATION OF ADHESIVE ARACHNOIDITIS FOR FAMILY AND FRIENDS
Arachnoiditis is a condition which begins with the inflammation of the Arachnoid Membrane covering the spinal canal and brain, this can cause a gradual build up of fibrotic scar tissue which disrupts the flow of cerebro spinal fluid (CSF) around the nerves and deprives them of nutrition.
The early symptoms of this condition can be all or some of the following:
Severe low back and leg pain, numbness and chronic pain in leg(s) and feet, burning sensation, especially in the legs and feet, bladder and bowel dysfunction and severe headaches. Many patients with this condition complain of the feeling of walking on broken glass. Often there are no outward signs of the condition and the sufferers look deceptively "normal" as the condition progress's the symptoms may increase and become more permanent. Some patients use wheel chairs, and most patients with Arachnoiditis have to give up work completely which leads to a feeling of uselessness and lonliness at also losing the strength to keep up a social life. Known causes of the condition are the following: Tuberculosis, Meningitis, Spinal Tumours, Abcesses, Spinal Surgery or Trauma BUT BY FAR THE LARGEST SINGLE CAUSE: is medical intervention such as Myelograms using Myodil Dye, even water based Myelograms are now know not to be safe, Radiculargrams, Epidurals (Steroids) and Lumbar Punctures and Cortisone Injections into the spinal canal.
Most of this definition was posted on Gateway to Neurology of Massachusetts General Hospital.
GOOD WEBSITES TO LOOK UP FOR ADHESIVE ARACHNOIDITIS
www.burtonreport.com
www.theaword.com
www.spineuniverse.com
www.btinternet.com
www.chronicpainassociation.org.au
We have been lucky enough to get Renee Goossens to agree to be a patron of our association. It is an honour to have Renee as a Patron. Renee is an author who has just released another book called Pain Management: learning to live with pain, she also has published another book called 'Belonging' which is an amazing story of her life. Renee comes from quite a famous family, her father was Eugene Goossens a conductor at the Conservatorium of Music who was very famous in Sydney and upon his idea the Sydney Opera House was built. Renee also sufferers from Arachnoiditis and is in a wheelchair and is an inspiration to all of us. If you wish to buy a copy of her Pain Management book you will find it at Big W. and she does various talks at local libraries and out of town ones. You will find Renee's web page on our links page and details of her books.
FIGHTING FUND
Donations have slowed down for our fighting fund so I am putting the Assoc. banking details on our web site so you can pay it online or in any bank. The details are: COMMON WEALTH BANK - AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW BSB 062 585 Account Number 10481519
I would like to remind members that the 2010-2011 fees are due 31st March 2010. The single fee is still $20.00 and $30.00 for 2. e.g. Husband and wife or carer and sufferer, even a family member and sufferer, whichever way you wish. If you still wish to get the newsletter you will have to renew. There will be no more newsletters sent out to members who have not renewed. You do not have to be a member to come to the meetings, but you have to be a member to have input and vote and receive newsletters.
The next meeting will be on Sunday 15th August, 2010. A lot of work goes into the meetings and some committee members travel quite some distance to get to the meeting. We have one who comes down from Gunnedah so come on you South Coasters, Central Coasters and city dwellers come and join us. The meeting is for you! Keep the Association going and growing,don't let yourself or our members down. Club Phone 02 42 951811. Please try to attend. We have been going 5 years now! We also have 3 new committee members who are Promotion Officers in Queensland and will hopefully open sub-branches there.
Our FIGHTING FUND has come to a very slow crawl, please, even a few dollars to get the first one's through. We need to see justice. We have no cure only justice so don't let this go. Even if you can donate stamps etc. it will all be a help. One idea a member came up with was arranging with the bank or if you know how to do PAYANYONE through your bank account, arranging to have $20.00 a fortnight put into the Association's bank account. The amount does not matter, it can be $5.00 or $500.00 whatever you can afford but if you are one of the one's going through please help by making a donation of at least $250.00.
We have set up our FIGHTING FUND SO we can pay for an expert to go to court and as the fighting fund puts it, fight for us, but we need ideas on how to get at least $30.000 into this fund and it is going to include every member, even members not going through. Those with a heart and can spare a couple of dollars to help the others out. There have been some concerns that the donations will not go to an expert but we will also need it to help our members fight this terrible thing that has destroyed our lives. We need to fight to get satisfaction for what has been done to us and hundreds of others who do not know what is wrong with them, but by us getting the word out there they will find out. So please, ideas and help please!!!!!
You would be pleased to know that our membership is growing, we now have members in WA, SA, VIC, QLD and of course NSW, it would be nice if all the people who email me or phone for help would join the Association, it is only $20.00 a year for one person or $30.00 for 2 as I put a lot of time into helping people who don't join. A lot of people need help and some are in a position to help others so please if you can help send your donations to our treasurer Mark or put them into the banking details on our web site and help us to help others. PLEASE HELP US TO HELP YOU! If you would like to be a contact in your state please call me. We are a support group so let's support each other.
You will find the list of your Committee on the Committee Page.
Once again our banking details if you want to donate over the net or over the counter of the bank are : COMMONWEALTH BANK - AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW - BSB 062 585 - Account Number 10481519
ABN 77 801 744 953