Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697636364355.pdf (Australia)
INQUIRY INTO SLEEP HEALTH AWARENESS IN AUSTRALIA Sleep disorders, especially in our case Type 1 narcolepsy (Narcolepsy with Cataplexy), are a little-known disorder that is having a large impact on many Australians and the community.

Narcolepsy, a rare neurological sleep disorder, show symptoms of excessive daytime sleepiness, sleep paralysis, cataplexy and hallucinations, that render the sufferer sometimes quite unable to function on any “normal” level.
This can affect their ability to study, to work, to drive, increase other symptoms such as depression, and basically to interact with others on a day to day basis.

Quite often putting extra pressure on the family and those who support them.

This condition leaves sufferers feeling isolated, some being unable to participate in activities that others in the community take for granted.
We have a 16-year-old daughter who has been advised that she will not be getting her licence, like all her friends, who is not allowed to swim on her own, for fear of her having a cataplexy episode and drowning.

Who also was an “a” grade student but can no longer stay awake at school, who was once a strong soccer player who has played at a State and national level and can now only mange probably 80% on a great day.
The cost to the community for our child, who knows because she will struggle to compete, her choices may be limited, and socially she feels isolated and alone, due to a sleep disorder.

Whilst living in a capital city, Hobart, we have very few specialised doctors in this field.
We travel regularly to Melbourne to see a paediatric sleep doctor, we have also travelled to Melbourne to see paediatric neurologist, and there are very few sufferers in Tasmania that we can connect with and very few children, maybe 1 other.

Treatment for narcolepsy is hard, especially in Hobart.

Any drugs are only designed to treat the symptoms, amphetamines to help keep her awake, antidepressants to treat the cataplexy and hallucinations.
The problem that we have with medication, is that our specialist in Melbourne can write us a script, however we are unable to use that script in Tasmania, especially for section 8 drugs.

We therefore then need to have a paediatrician in Hobart who is willing to write these scripts for us, but this involves back and for between the two specialists and if one doesn’t agree on a new course of action, then we are no better off.
The medications that our daughter currently takes are ineffectual and due to her age and size we are no longer able to increase her dosage, and little is known about the long-term side effects of these medications.

The other problem we face with effective treatment, is that drugs that are readily available in either the USA or Europe, are not quite so readily available here and if they are the price is prohibitive for many families.
Whilst I fully understand the process of the TGA and drug Inquiry into Sleep Health Awareness in AustraliaSubmission 42 companies etc, I fail to understand why something that could be so life changing for many sufferers is available to a few.

Being in Tasmania offers us little in the way of support groups, medical facilities designed to better understand this condition and treatment options.

Yes, it is our choice to live here, but we also shouldn’t be penalised because of that choice.
Many narcoleptics go years without a proper diagnosis, and whether this is due to doctors not understanding exactly what it is or the symptoms around the disorder I am not sure.

Sleep disorders present in many ways, I feel confident that if more was done to raise awareness both at a professional and community level it would greatly reduce the wait times these people have.

We were lucky that we had an amazing GP who believed in what we said and was prepared to stick his neck out for us.
On the same hand we had a paediatric neurologist who did not believe us and was adamant that it was epilepsy.

Misdiagnosis is common with this disease.

Conferences like the one currently being done in Brisbane, Sleep Down Under 2018, are integral in helping raise awareness and more should be done.

Organisations like Narcolepsy Support Australia have been a major support for us, but like any little not-for- profit organisations, lack the funds to be able to do so much more.
Funding should be directed towards these types of things so that that on a professional and community level people are much more aware.

These organisations are run by volunteers, who have a vested interest in making things better for the people they love, on a shoestring budget and only want to be able to give better direction and understanding to those affected by this disease.

Not only do we have a daughter that suffers from Narcolepsy, but we also employee up to 100 staff in our businesses.
As a parent, I worry about what work options will be available for our child.

Will her workplace understand her conditions and the restrictions it can place on her?

Will she feel confident enough to discuss with her employer and not feel intimidated or victimised.

What national standard practices can we get to best protect her and others.

If in the worst-case scenario, she is unable to work, what can the government do to help.

Can this sleep disorder readily become part of the NDIS?
As an employer how can I restructure opportunities to allow us to accommodate people in a similar position, is there any support/training we can receive to better understand from an employer’s perspective how we can help?

From our understanding, little exists in Australia in the way of medical research into some sleep disorders.

If genetic testing needs to be done for say Narcolepsy, it would have to sent to France, being way to cost prohibitive and time consuming.
Whilst we are fully aware that at this point there is no cure for Narcolepsy, better treatment options should be researched, trying to get that blood/brain barrier crossed to be able to replace the lost orexins, or if gene/stem cell replacement may help.

Inquiry into Sleep Health Awareness in AustraliaSubmission 42 There are many different diseases etc in Australia, and we do realise that Narcolepsy effects only a handle full of citizens.

Just because we are small, does not mean we should be forgotten.
It has an impact on every area of daily life, the effectiveness of a person’s ability to get through a day, a lack of understanding in the general population and medical world.

It is estimated that only 25% of people who have narcolepsy have been diagnosed and are receiving treatment.

It is also reported that only 22% of sleep specialists can identify all 5 symptoms of narcolepsy.

Worldwide narcolepsy affects approximately 3 million people and it affects men and women equally.
It is not like the movies, it is worse and when you watch a love suffer from it and can do nothing to help them it is heartbreaking.

For more information please feel free to contact us Inquiry into Sleep Health Awareness in AustraliaSubmission 42