Sarcoidosis Lyme Australia has been operating now to support Australian's with Sarcoidosis and Lyme Disease for over 18 months and has seen a need via our on-line support network to now extend what we are trying to achieve.
Our next step was to become a registered health promotion chariy this has now been achieved.
So what is a Health Promotion Charity (HPC)
A Health Promotion Charity is a non-profit charitable institution whose principal activity is promoting the prevention or control of diseases in human beings. The characteristics of a health promotion charity are that:
· its principal activity is promoting the prevention or the control of diseases in human beings
· it is a charity which is a charitable institution.
Examples of activities that can promote the prevention or control of disease include:
· providing relevant information to sufferers of a disease, health professionals, carers and to the public
· researching how to detect, prevent or treat diseases
· developing or providing relevant aids and equipment to sufferers of a disease.
If you learn one thing today please try and understand that just because people look well it doesn't mean that they are. Please take a minute to watch the above video before you continue browsing this web site. Thank you for visiting us today your support is so important to us.
Welcome to Sarcoidosis Lyme Australia which was been formed by a group of people whose lives have been affected by Sarcoidosis and Lyme Disease.
In Australia there appears to be very little support for those of us 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 this mostly does not exist. Probably because we are a minority and the need is not seen.
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 recognized 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
We will explore how we can create awareness through our Healthcare System. If you follow the journeys of people who have Sarcoidosis and Lyme Disease you hear the same story time and time again.
The symptoms and signs that patients have with Sarcoidosis and Lyme Disease are rarely recognized 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’
*Listen to those in need of encouragement
*Offer assistance
*Do you have contacts etc who can help us raise funds or make a donation? If so please let us know.......
*Would you be willing to donate funds?
*Help us with fundraising?
*Do you have connections with anyone in the Health arena that would be prepared to help us - someone with influence?
We need to create 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.
Proud to be a
