Thyroid disease affects 1 in 14 Australians. Find out how you can help THYROID WA increase awareness in the community. Get involved. Volunteer.
Volunteers are the mainstay of the support group. Without Volunteer involement and commitment the support group would not function. Contact Us for more information.
The AGM was held in October and a new Board was formed. Thank you to the retiring Board Members, Bridget Boyd and Graeme Mutton. Their assistance and input, even before incorporation, has been invaluable. John Boyd and Cath White remain on the Board and will assist and encourage the new Board members. The discussion with existing and new Board members was very positive and hopefully the new Board members will transition easily into their various roles. We look forward to the upcoming year and wish the new incumbents well in their roles.
The ongoing future of the support group means that every member needs to get behind the Volunteers to support and assist them in every way possible. Volunteering can be rewarding, especially when you know your endeavours assist people newly diagnosed or struggling to gain information about their thyroid diagnosis.
The Board cannot operate effectively in isolation of its members and future plans depend on input and ideas from members!
If you have any questions, please do not hesitate to contact us.
IS THERE A CONNECTION BETWEEN THYROID DISEASE AND GLUTEN? Yes, many thyroid patients have non-coeliac gluten intolerance and some have coeliac disease. If you suffer from bloating, flatulence, malabsorption, tiredness after eating gluten, constipation or foul smelling fatty stools then it may be wise to ask the doctor for a blood test (antigliadin IgG and coeliac panel). You must be on a normal diet before you do the tests, because the tests become negative once you are on a gluten free diet. The diagnosis of coeliac disease is confirmed by a positive biopsy obtained through an endoscopy. Studies have also shown that thyroid antibodies are gluten dependent and decrease on a gluten free diet, but a gluten free diet may not stop thyroid disease from progressing further. However most patients with autoimmune thyroid disease and non-coeliac gluten intolerance (gluten sensitivity) or coeliac disease feel better on a gluten free diet.
For more information contact the Coeliac WA on 9451 9255 or visit their website www.coeliac.org.au
THYROID HEALTH AWARENESS TALKS - THYROID WA provide free talks to Community Groups. Bookings are now being taken. So if your community would like to know more about thyroid health then please Contact Us with your request and a Volunteer will get back to you.
Remember THYROID WA is operated entirely by Volunteers and we will endeavor to reply in a timely fashion.
SECRET FACEBOOK GROUP
Like to chat with others with a similar thyroid experience? Join THYROID WA secret FB group. https://www.facebook.com/ThyroidWA has a "thyroid only" secret group where you can chat with other like minded thyroid sufferers.
If you or a family member has thyroid disease, jump on the THYROID WA Facebook page and ask to join the group via MESSAGE. The main purpose is to support others and perhaps swap your thyroid health journey. You need to be a thyroid sufferer.
2015 Annual General Meeting
AGM was held on Sunday 22nd November. THYROID WA welcomes all the new volunteers. The existing board members are very pleased with the AGM outcome and will look forward to new energy into the group. The minutes will be posted on the website and all Volunteers contacted about the roles discussed. There will be transition time for new people to come up to speed with what we do and how we do it. Thank you everyone who attended the AGM. Cheers - John / Chairperson
Further information is also available on the website menu ABOUT US > ANNUAL REPORTS & AGM
Membership Update - Membership renewals have been temporarily suspended. If you recieve a notification please disregard.
Membership Review - Over that last few years THYROID WA have been having difficulties obtaining volunteers to assist with many tasks, including administration duties, such as processing membership.
Many times we have put it out there to attract new volunteers but without luck. Our main focus was support so the current volunteers were tasked with maintaining the core roles of support and presentations.
As we didn't have any administration staff and memberships were a small component of our financial base, we decided to remove the memberships and renewals component from the website and not collect fees. Unfortunately are few settings were overlooked and automatic renewals were sent. Please disregard them.
Your membership and access to information on the website and E-News will remain the same.
New RESOURCES link - www.edmcasereports.com Endocrinology, Diabetes & Metabolism Case Reports, is a new online resource that publishes and links together case reports on common and rare conditions in all areas of clinical endocrinology, diabetes and metabolism.
This venture is a collaboration between Bioscientifica www.bioscientifica.com and several leading national and international societies around the world; all working together with the aim to further medical education and clinical practice. This is of particular importance in the field which encompasses many rare diseases that are often difficult to conduct clinical studies on. For this reason, case report literature is immeasurably beneficial, both for treatment and education.
You can read about the experiences of others living with thyroid conditions and may be able to help other patients living with these disorders by encouraging their doctors to publish their own case reports. As this freely accessible database grows, it further enables practitioners to learn from each others’ experiences.
Volunteers are Needed - Support the organisaton that supports thyroid patients. We need experienced people in the Not-for-profit area who know about the rules and regulations and are suitable to fill Board roles. At least four positions are required.
Are you interested in increasing: Self Confidence / Self Esteem / Life Satisfaction / Sense of Accomplishment / Positive View of your life and future goals / Your Knowledge Base on Thyroid Conditions / Supporting your Community
THYROID WA is managed entirely by unpaid Volunteers, all who have thyroid disease. THYROID WA feel this group is very important and valuable asset to ALL members. To ensure its longevity volunteers are required. All we are asking for is - at least 1 hour of your time per week/fortnight.
UPDATE - A Volunteer coffee meeting was held and a few more people have put up their hand to assist with Facebook and Coffee Meet ups. THANK YOU !!
THYROID WA NEED TO GET THE WORD OUT ABOUT THYROID HEALTH - We are still looking for someone to volunteer to contact Community organisations that may be interested in holding (free)THYROID AWARENESS talks. All that is required by the volunteer is phone / email contact and scheduling dates- the community group normally organises attendees. If you can assist please CONTACT US to show your interest and we can organise to meet and discuss what roles you may like to play.
Coffee Catch up for Thyroid Sufferers - Many people request "get togethers" for thyroid sufferers, especially on weekends. Volunteers will continue to put forward times and locations suggested by members. Confirmation of attendees will be required before any dates get confirmed and published. If you would like to meet up with other thyroid sufferers over a "cuppa" and have a chat about all things thyroid, then CONTACT US via the website and suggest a time and location (generally a coffee shop - with their pre approval). THYROID WA Volunteers will assist you to faciliate this much needed "informal" gathering. THYROID WA encourages you to take part and connect with other thyroid sufferers.
Alternately if you wish to "chat" with Volunteers or other "thyroid sufferers" you could attend one of the scheduled Thyroid Awareness Presentations held through out the metro area.
Gluten Free Food and Healthy Expo 2015 March 21st Saturday & 22nd Sunday
The THYROID WA stand at the "2015 Coles Gluten Free Food and Health Expo", for Coeliac Awareness Week was a great sucess. Over the two days, Volunteers chatted to over 200 people, all with various thyroid issues.
Generally, many people we spoke to had autoimmune thyroid disease with a few having had cancer or nodules and requiring their thyroid to be removed. Quite a number of people had not been diagnosed with a thyroid condition but displayed many "thyroid type" symptoms. With CHECKLIST in hand they were off to schedule a consultation with their GP.
Most people we spoke to expressed concern about their current treatment as they were not SYMPTOM FREE and were looking to find a "thyroid savvy" GP.
A few people indicated that they had recently changed GP and "had felt better in such a short time" under the guidance of their new GP. It was great to hear some positive feedback with people taking control of their thyroid health and getting the treatment they deserve.
For more information about the event visit Gluten Free in WA
Is there a connection between thyroid disease and gluten? Yes, many thyroid patients have non-coeliac gluten intolerance and some have coeliac disease.
If you suffer from bloating, flatulence, malabsorption, tiredness after eating gluten, constipation or foul smelling fatty stools then it may be wise to ask the doctor for a blood test (antigliadin IgG and coeliac panel). You must be on a normal diet before you do the tests, because the tests become negative once you are on a gluten free diet. The diagnosis of coeliac disease is confirmed by a positive biopsy obtained through an endoscopy. Studies have also shown that thyroid antibodies are gluten dependent and decrease on a gluten free diet, but a gluten free diet may not stop thyroid disease from progressing further. However most patients with autoimmune thyroid disease and non-coeliac gluten intolerance (gluten sensitivity) or coeliac disease feel better on a gluten free diet.
For more information contact the Coeliac WA on 9451 9255 or visit their website www.coeliac.org.au
IMPORTANT NOTE : As coeliac disease is a serious medical condition with lifelong implications, a definitive diagnosis is essential. The gluten free diet is not a trivial undertaking and involves lifestyle changes and learning new skills such as reading and interpreting food labels. It should only be undertaken after the diagnosis of coeliac disease has been properly medically established.
THYROID WA is in need for some “new blood” to take the organisation to a new level, perhaps with innovative ideas for the future or just to lend a hand in a “housekeeping role”.
Initially thyroid support in WA provided group meetings only. In 2005 THYROID WA raised funds to develop a structured, incorporated, not for profit, thyroid support organisation with Rules and Purposes.
Since 2005 there have been three key volunteers and Board members operating the support group (even though new Volunteers were always encouraged and sought out). That said, even with minimal volunteers, the THYROID WA board has been successful in running the organisation on a “shoe string” budget.
Education is the key to better health outcomes and providing an informative and comprehensive website, facilitating support enquiries direct to THYROID WA Volunteers (via the CONTACT US on the website) and at a more personal level, providing regular Thyroid Health Awareness Presentations (where attendees could ask questions in a group forum) has been focal part of the success to date.
The volunteer roles we have are
1) Administration - to look after all our admin requirements, schedule meetings, make sure BAS is done on time, minutes of meetings to be done etc.
2) Marketing our group - which means organising presentations to community groups, contact community groups and make sure publicity is done for the talks. Maybe look at an awareness day, once a year
3) Fundraising activities - needs discussion but we have been well established with raising funds but need to start again, we have tax free status and a charity licence.
Further information see current Volunteer roles
THYROID WA 2014 Forum Update The Forum has been suspended. Please use the THYROID WA Facebook to raise any issues.
ThyroidChange is a (US) registered nonprofit patient organization, dedicated to improving the diagnosis and treatment of thyroid disease through a physician-patient cooperative approach.
Born from the desperation of thyroid patient Michelle Bickford in May of 2012, the grass-roots initiative ThyroidChange has branched out to become so much more than the original petition to improve the treatment of and raise awareness for thyroid disease. With a presence on various social media, including Facebook and Twitter, biweekly blogs and its own US and international lists of patient-recommended doctors, the patient advocacy organization is doing its utmost to achieve its mission.
To read the Thyroid Change - Vision, Mission, Goals, click here
ThyroidChange Website: http://www.thyroidchange.org/
Thyroid Health Awareness presentations
Throughout 2014 volunteers have provided numerous Thyroid Health Awareness presentations to community members. The schedule is now complete and further presentations will be scheduled for early 2015.
Thyroid Health Awareness presentations aim to raise awareness of thyroid disease and provide valuable insights into thyroid health. The presentation covers thyroid disease and available treatments. The talk is tailored to the audience and Q & A is encouraged. It is a great opportunity to chat with THYROID WA volunteers.
Buying medicines and medical devices over the Internet
Products available on international websites are not regulated by the Therapeutic Goods Administration (TGA). If care is not taken, consumers may inadvertently break the law, waste their money or risk their health. Read the full extract from the Australian Government Department of Health Therapeutic Goods Administration (TGA) article on buying medicines and medical devices over the internet.
For those patients with autoimmune thyroid disease don't forget to view the Coeliac Australia website for further information that may assist. For example they have a Fact Sheet - Monitoring and follow-up of coeliac disease that mentions screening for associated conditions including Thyroid Function Test (Graves' disease or Hashimotos thyroiditis)
Rare Cancer Australia
Rare Cancers Australia, spear-headed by Kate and Richard Vines, states that only 12.6% of research funding is spent on rare and less common cancers and yet, or perhaps because of that, these cancers account for 45% of cancer deaths. View the interview with ABC Breakfast TV for more information http://www.abc.net.au/news/2014-03-17/rare-cancers-australia-co-founder-richard-vines-joins-abc-news/5324804
GIVE NOW WEEK
THYROID WA SUPPPORT GROUP INC. is gearing up for a great week of giving as the organisation prepares for Australia’s biggest annual celebration of the community spirit. GiveNow Week 2013 is taking place from 1- 8 December 2013– and THYROID WA SUPPPORT GROUP INC. is urging its supporters to take part. Now in its seventh year, GiveNow Week is designed to focus attention on the many ways that individuals, families and businesses can make a difference to the community in the lead-up to Christmas and beyond. The event is anchored by a website – www.givenowweek.com.au – which provides inspiration and ideas that will help turn people into better givers.
Activities are being coordinated by the Our Community Foundation, which runs the GiveNow.com.au giving service, providing access to commission-free online donations for community groups. Both GiveNow Week and GiveNow.com.au are supported by Westpac. GiveNow Director Kylie Cirak said THYROID WA SUPPPORT GROUP INC. was one of around 2500 great causes listed on GiveNow.com.au that could do with more local community support in the year ahead. “GiveNow Week is the perfect opportunity to highlight these excellent causes,” she said SUGGESTIONS FOR GIVING
Are you getting together with friends for a pre - Christmas event and normally exchange “useless token gifts”? This year rather than the swap, suggest collecting a few dollars and donate them to THYROID WA SUPPPORT GROUP INC via http://www.givenow.com.au/thyroidwa
THYROID WA would like to thank its many supporters and we look forward to assiting many more thyroid patients and their families.
Wishing everyone a very happy Festive Season.
UPDATE ON CARBIMAZOLE
There is a global shortage of Neo-Mercazole (carbimazole), which is often prescribed to people with an overactive thyroid (hyperthyroidism). For more information see the latest update on the Therapeutic Goods Association website
WHY COMMUNITY PRESENTATIONS
Help THYROID WA get the word out there about thyroid health!! Do you belong to a group that would like a guest speaker? THYROID WA provide a guest speaker, free to community groups, to talk about thyroid health. Each talk is tailored to the audience, so whether your group would like a talk for 45minutes or 1½ hours please CONTACT US to discuss further.
RURAL IN REACH - Womens Health and Family Services
THYROID WA was able to "teleconference" to an audience at mulitple regional Communuity Resource Centres. The PPT presentation is a great format to communicate remotely. The engagement by the audience was very smooth and the response from the participants was excellent. THYROID WA hope to provide another Thyroid Health Awareness talk to the Rural In Reach program.