Supporting people to find their own solutions to improve well-being

Tarlov Cyst Disease Society of Australia

Current Size: 100%

Address: 
28 Buena Vista Rd
WOODFORD NSW 2778
Australia
Contact Hours: 
Email only any time, however, this is not a 24hr service so please be patient. Our confidential facebook group is always open.

Group Description

The Tarlov Cyst Society, Australia is a support group for Tarlov Cyst Disease patients within Australia and a sister group to Tarlov Cyst Disease Society, Canada.
We exist for the sharing of information and support with one another. Between our members we share a wealth of information and are more than an online community, we are a family.
We are of all ages, backgrounds, and social classes and have come together to help and support each other. We are not specifically a religious or ethnic group, meaning all are welcome here.
We aim to promote awareness of the rare genetic disease Tarlov Cyst Disease. Tarlov cysts are also known as perineural/perineurial, or sacral nerve root cysts. They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid that can cause a progressively painful radiculopathy (nerve pain).
Currently, as far as we are aware, there are no medical specialists within Australia who have success in the treatment of the disease. Patients are reliant on nerve pain medications to cope with the varying degrees of pain, some also require opiates to manage pain levels under medical supervision.

Area Serviced

National

Services

Services/Activities: 
  • Email and online support
  • Fact sheets
  • Peer group
  • Personal advocacy
Specific issue 
  • Sympomatic Tarlov (meningeal or perineurial) Cysts.
Who can join 

Both male and female sufferers and carers, medical practitioners, medical researchers.

Membership Fee 

Nil

Additional information 
We are a confidential support group with rules for members to ensure all privacy is respected. Members breaching privacy will be removed from the group.