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27Jul

"Knowing Your MG"

JULY’S TOPIC: The Onset Age and Duration of Symptoms!

MG affects both men and women and occurs across all racial and ethnic groups.  It most commonly impacts young adult women (under 40) and older men (over 60), but it can occur at any age, including childhood.  Myasthenia gravis is not inherited nor is it contagious.  Occasionally, the disease may occur in more than one member of the same family.

More on this story, Page 4 of July’s Newsletter.

27Jul

Carers of those with Myasthenia - Closed facebook Group

There are many groups out there for those who suffer with Myasthenia Gravis.

It is often underestimated how much support carers need and also that they have a place/forum where they can chat confidentially. Looking after someone with a chronic illness where there is no cure can be soul destroying.

This page allows carers to talk confidentially together.

So if you like me have a partner with MG and want to talk to others in the same boat . . . please come and join us!

...
27Jul

Dylan's Run to Raise Awareness

“A short email to the Qld Association on June 20th, followed by a reply indicating some possible options and suddenly Dylan has committed himself to running 5km in a Melbourne Fun Run raising money for myasthenia!  He was motivated to commit to this opportunity out of care and concern for his father. Dylan explains the importance of knowing that support is available to all Australians. He has committed the funds raised to ensuring the continued operations of the Myasthenia Alliance Australia...

27Jun

June is Myasthenia Awareness Month and the MGAQ have nominated the theme as "Knowing Your MG"

What you need to know about your MG subtype:

•   The onset age and the duration of symptoms

•   Ocular versus generalised

•   The antibody involved (AChR, MuSK, others, seronegative)

•   The thymus gland status (hyperplasia, tumor, normal)

•   The treatment response (non-refractory, versus refractory) - Every medication you have tried for MG and the outcome.

In the coming months, we will focus on helping YOU better understand YOUR MG!...

27Jun

Myasthenia Alliance Australia Rituximab / MabThera Questionnaire

The MGAQ is supporting the Myasthenia Alliance Australia in learning more about the difficulties Australians are facing in accessing treatment with the drug Rituximab / MabThera. The alliance is asking that anyone in Australia who has been offered, or is currently receiving this drug treatment, please complete this questionnaire. 

Whilst there has been a good response to date, there are many more people who may be willing to share their experiences. Currently, responses are fairly...

27Jun

My Health Record

Keep track of your important health information all in one place. For you and your family.

In mid-May, the Consumers Health Forum (CHF) issued a media release informing Australians of the date when they’ll be able to opt-out of having a My Health Record created for them. The first date that people can opt out is 16 July and ends on 15 October, 2018. One month after that October date, every Australian who has chosen not to opt out, will have a My Health Record created for them. Learn...

29May

MGAQ Mid-Year Function Advance Notice

WHEN: Sunday 10 June 2018 - 10am for 10.30am start.

WHERE: Southern Cross Sports Club, Corner Klumpp and Logan Roads, Mt.Gravatt (vehicular entrance is from Klumpp Rd). Lunch is available at the venue with a varied and reasonably priced menu.

WHAT DO I NEED TO BRING? Yourself and whomever else you wish to bring along – the more the merrier.

HOW DO I GET THERE? UBD Map 201 Reference D7.

RSVP:...

29May

Mid-Year Function Guest Speaker

Come along and hear our Guest Speaker, Mrs Katrina Williams, Lecturer in Physiotherapy, School of Health and Rehabilitation Sciences. Katrina will speak about:

  • An update on the evidence which resulted from the previous research paper into Exercise and MG.
  • Dizziness and imbalance issues for ocular MG.
  • Tips for working with your exercise providers to ensure correct outcomes.
  • And more!
  • You can ask questions and be assured you will go away with...
29May

Membership Subscription Renewal

It’s that time of the year again when Membership Subscriptions for the financial year 2018/2019 are due.

The envelope in which your newsletter is enclosed will advise you when your membership expires. If you look along the top line you should see “YOUR NAME” followed by some figures in smaller print than your address.

If you receive the newsletter by email and are unsure whether or not you are currently financial, please phone our 1800 802 568 freecall number or email...

7May

Rituximab/MabThera Questionnaire

The drug Rituximab, otherwise known as MabThera, appears to be a more regularly considered treatment option for people with Myasthenia Gravis.

Access to this drug varies greatly depending on each individual situation.

The Myasthenia Alliance Australia Committee is interested in learning more about accessing difficulties Australians are facing.

We ask that anyone in Australia who has been offered, or is currently receiving this drug treatment, please complete this...

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