In Australia there appears to be very little support for persons affected by certain Chronic Illnesses or Diseases such as Sarcoidosis and Lyme Disease. If you have Cancer or MS for example, there appears to be a plethora of help and support, but for Sarcoidosis and Lyme not much help or support is available. Probably because we are a minority the need is not seen. It appears the numbers reported of those affected in Australia for both Sarcoidosis and Lyme disease is not a true reflection of the real presence of these conditions here in Australia. These are not notifiable diseases so how can we have accurate figures. In fact Lyme disease is not even recognised as a disease that exists in Australia. See links below:

http://www.abc.net.au/worldtoday/content/2010/s2958843.htm

http://www.smh.com.au/nsw/widow-of-lyme-disease-victim-to-sue-nsw-health-20100902-14rpn.html

It is our hope that through this web site we will bridge a small gap needed, and that is to create a support network for both Sarcoidosis and Lyme disease in Australia. It seems most of us are scattered through different states, so initially it seems more feasible to create an online support network.

We intend to explore how we can start to create awareness through our Healthcare System; just like what is happening in the UK. If you follow the journeys of people who have Sarcoidosis and Lyme you hear the same story time and time again.

The symptoms and signs that patients have with Sarcoidosis and Lyme are rarely recognised by most GP's and specialists, as constituting a discrete systemic illness.

Many symptoms associated with these systemic diseases are not seen as a whole constellation of problems resulting from the diseases themselves, but as separate and unrelated conditions which can include but not limited to: fibromyalgia, bursitis, arthritis, facial palsy (drooping and/or paralysis of the muscles on one side of your face), headaches, tinnitus, restless leg syndrome, uveitis, eye pain, blurry or double vision, blindness, weakness, numbness, tingling and/or pain in the face, arm and/or leg paralysis, muscle fatigue, seizures, behavior and mood changes, irritability, memory loss and hallucinations. Neurosarcoidosis can even include: nerve inflammation and damage, peripheral neuropathy, masses of granulomas in the meninges (or more rarely in the brain) that can lead to meningitis, hydrocephalus and neuroendocrine disorders and even coma etc just to name a few.

What you can do to help and show your support:

*Please sign up on the face-book page - this is a closed group so you will need to apply for membership. In being a closed group it means your chat and questions will stay private to only those invited members of the group.

in joining our group you will be supporting others in need as well as seeking help and friendship for yourself.

Other ways you can help:

*Take a just couple of minutes a day and be active on our forum/face book page and support one another – even if it’s just a ‘Hello, how are you today’

*Offer advice or assistance

*Support by contributing articles and your personal stories etc that can be posted on this web site and the blog site www.sarcoidosis-sarcoid.com

*Do you have contacts etc who can help please let us know?

*Does anyone have connections for a patron?

*Can anyone create a logo for us?

*We need someone to help us become a registered incorporated association but for that we need financial support. Maybe a Medical or Drug Company etc would like to take up the offer?

*Do you have connections with the Prime Minister or Health Minister or anyone in the Health arena that would be prepared to help us - someone with influence?

We need to create an online awareness that we Sarkies and Lymies are suffering and need more help from the medical world in Australia.

This is just a small start but we have to start somewhere. Please spread the news to any who may be able to help, even in a small way.

If you have contacts with anyone who can help please let us know.