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To: Minister for Health - State and Federal

Bent and Broken

There are thousands of Australians facing a life of debilitating symptoms including chronic pain, immunological, gastrointestinal and cardiac complications of a group of genetic conditions which affect the body’s connective tissues.
These conditions are poorly understood by Dr’s and as such patients spend years trying to find a diagnosis for their complex symptoms. Currently Australia does not have any capacity within the medical system to effectively manage these patients. The lack of integrative specialists with the knowledge of these conditions is astounding, in what is supposed to be a first rate health care system. Australia also lacks integrative clinics where research based coordinated care and treatment specialising in rare Genetic conditions which includes the spectrum of connective tissue disorders as well as others.
The estimates currently for the most common type (Ehlers Danlos Syndrome - Hypermobile type) is 1 in 5000. It is autosomal dominant so each pregnancy has a 50% chance of inheritance.
Specialists and researchers believe that the rates of hEDS are likely much higher than first thought.
In Australia we do not even have an advocacy group as is the case in other countries. This is primarily because most of us suffering this syndrome are either too sick ourselves or busy caring for kids who are suffering.
We need help!!
We need better education of our medical professionals regarding these conditions.
We need help and funding to be able to set up an advocacy group (which would be an arm of the well established UK organisation)
We need Specialists to be trained in not only the diagnosis of these conditions but then be able to coordinate a Care Team to oversea the treatment with a multi-system approach.
The current system leaves patients and families thousands of dollars out of pocket each year because they are forced to pay for multiple private specialists and allied health professionals. This creates a form of medical poverty for many.
We need the public to gain awareness of this issue and get behind us as we really really need that support.

Why is this important?

All of us have had some experience with someone experiencing chronic illness.
Imagine if it were you, and you have faced a life being told, ‘it’s in your head, oh it’s not that bad, I don’t know what’s wrong!’
This is the common experience of people with rare conditions.
The social media groups are filled with horror stories of poor treatment, medical gaslighting and a profound level of medical ignorance.
It is appalling that here in Australia we do not have adequate trading of Dr’s in these conditions.
I think most of us could recall a time when we have had a bad experience with medical treatment, imagine if that one experience was repeated many times over, over many years. At the same time you just continue to get more unwell.
This is what it’s like to have a rare genetic condition.
I believe that we can demand better from our decision makers.
I believe that this is an opportunity for Australia to lead the world in coordinated treatment and research options for those with these conditions.


2022-11-20 12:18:06 +1100

500 signatures reached

2022-08-29 18:41:21 +1000

100 signatures reached

2022-08-28 07:20:17 +1000

50 signatures reached

2022-08-27 16:11:23 +1000

25 signatures reached

2022-08-27 12:32:34 +1000

10 signatures reached