How many people have Syringomyelia?
There isn't a lot of references to how rare this condition is. The most frequently stated is 8.4 per 100,000 making it a rare condition.
What are the Awareness Colours?
Blue! a nice medium blue is what we wear to show support
When is Syringomyelia Awareness Month?
May! All of May is dedicated to raising awareness for this condition.
Can you recommend a Syringomyelia Specialist?
We don't offer a definitive list of doctors. We do a keep a patient-generated list of doctors on hand for private surgeons. this can be accessed by contacting us here or by going to our support group. We are not affiliated nor recommend any specific specialist. Please also remember what might be a great surgeon for one may not be what you need. These are Australia based doctors only.
Can I get the Disability Pension/NDIS with a Syrinx?
The short answer is MAYBE. Yes, some people with Syringomyelia have been able to get disability payment and help through NDIS. It depends on the level of disability it has caused. These services are less focused on the diagnosis but the disability it causes.
Is Syringomyelia Fatal?
Thankfully it rarely is. It used to be back in the day, but with the development of new technologies and monitoring, this is rarely the case. That is why some older research/information may talk about this. Life-expectancy has increased greatly and most should expect to have in issues here.
How do I know when I need Surgery?
That is always hard to say and is usually discussed between you and your surgeon. Not all cases are able to have surgery, so it is dependant on if your case can be managed surgically.
How can I raise awareness/fundraise for Chiari and Syringomyelia Australia
We are still working on becoming a not for profit so can't accept official donations. When we can they will be listed in the donation section.
Until then you can buy stuff at our shop and wear awareness items.
We also post public awareness information on our Facebook page and use the hashtag #cmsmaus which we hope people will share and use our hashtag. We always have something extra on the awareness months.
What can I do for the pain?
Get your GP or specialists to refer you to a pain specialist.
Is Syringomyelia Genetic?
As far as research is concerned no. However, some causes of Syringomyelia such as Chiari Malformation can be genetic. As there are still cases of idiopathic syringomyelia (unknown origin) there are still mysteries with Syringomyelia.