Archive for the ‘News’ Category


Alternative Medicine and Joint Pain

December 13th, 2009 by Glenn

When faced with a chronic condition you are always on the lookout for something that might help.

So what do you do when you hear about acupuncture, reflexology or some other form of alternative medicine that claims to help with joint pain?

Simon Singh has written a number of books about science, and I’ve always been impressed by how thorough he is and how well he can explain complex topics.

Most recently he has written Trick or Treatment? Alternative Medicine on Trial. After watching the 15 minute ABC Fora session featuring Simon (view below), I plan on getting the book.

If you are working with, or considering working with a chiropractor, the book presents information on chiropractors that you may find relevant. An article by Simon Singh published in The Guardian has some very specific claims.

Link to the ABC Fora page: Choose Your Poison, July 2009

A description of Trick or Treatment from the book’s website:

In Trick or Treatment? the truth about the efficacy of alternative medicine is rigorously addressed for the first time by the scientist uniquely qualified to do so: Professor Edzard Ernst, the world’s first professor of complementary medicine. Having spent over a decade at Exeter University meticulously analyzing the bewildering evidence for and against alternative therapies, this former practitioner of both traditional and complementary medicine brings no bias to the subject.

Writing with him is the respected science writer, Simon Singh, who also brings his considerable scientific knowledge and scrupulous impartiality to this most controversial subject. Together, they deliver a hard-hitting, yet honest examination of more than thirty of the most popular treatments, such as Acupuncture, Homeopathy, Aromatherapy, Reflexology, Chiropractic and Herbal medicines.

Whether you are an ardent follower, sceptic or just plain baffled by the subject, Trick or Treatment? is a groundbreaking guide which finally lays to rest the doubts and contradictions that have dogged this subject for so long. Written with authority, integrity and clarity, this book delivers the ultimate verdict on alternative medicine.


How To Get Resources for Your Child At School

November 15th, 2009 by Julia

At the parent group today one of the mothers celebrated that after four years her daughter finally had a lap top at school.

To a lot of people it would seem incredible that a child in chronic pain would have to wait that long.  There are resources out there but it can take a huge effort if you don’t have the right words on the right bit of paper for the right person.

In this case the process for change followed these steps;

  • The child had an assessment by her specialist.
  • He wrote a letter to the school outlining the child’s condition and the effect this condition would have on her.
  • The specialist wrote a referral for a private occupational therapist to visit the school and make an assessment of the school environment.
  • The occupational therapist then produced a report for the school on the changes that needed to be made for the student to fully participate.

The school explained to the family that once the school has the report it must act on it immediately. Apparently there is considerable accountability to Disability Services once such a document is tabled.

In this case all the efforts to lobby the school for extra support had not been effective.  It was not until the family asked the specialist to assist that action was finally taken.

The assistance children can access depends on many factors-

  • The time and energy parents have to knock on doors and ask for questions. (Are both parents working full time?)
  • Access to a specialist with a willingness to assist. (Do families understand that their specialist can help?  Is that person approachable and helpful on this practical level.)
  • The attitude and internal resources of the school. (Some schools have experienced caring staff who will help.)
  • Resources within disability services in that particular area.

If your child needs extra resources at school you might try the process described above.

My husband also recommends writing a letter to the school Principal describing your child’s needs and asking what you need to do to access the available resources – from the school and any related government agencies.

I’d be interested to hear how you have tackled it and what your experience has been.

PS. We had a lap top provided for our daughter by the Centre for Inclusive Schooling. We found these people difficult to deal with.  Once it was too difficult for my daughter to attend school we transferred to School of Distance Education.  Our daughter continued her education from home. The Centre for Inclusive Schooling then asked for the laptop back.  Apparently she could only have a lap top if she went to a day school. Good one guys!


Ordinary is EXTRAORDINARY

September 13th, 2009 by Rona

The ordinary is the new extraordinary. Have you noticed that the ordinary things that we do are now seen as extraordinary.I am a housewife and everyday I take the steps of becoming extraordinary in doing just ordinary things. Being a housewife I treat each day like I have a spring in my step and I challenge myself to achieve great things by completing the ordinary tasks well. The degree of difficulty I have behind the spring in my step is my twin daughters have Ehlers Danlos Syndrome, EDS, so my message to you all know matter how difficult some days get, I challenge you to make your ordinary day EXTRAORDINARY and add a dash of PINK into your world…I have entered the SMITH’S “Do us a flavour” competition here in Australia and I am hoping to become one of the four finalists. My original flavour is PINK Rock Salt. I will keep you all posted. PINK has a lot of meanings to different people, so what does the colour PINK mean to you?


OMG thank you OM4

August 23rd, 2009 by Rona

Thank you Glenn of OM4, who is a custom designer of business websites.

Today Glenn inspired our group of young people, all with varying degrees of joint problems.

He showcased to our our children their employment opportunities in the new online ecomomy.

Computers and the world wide web have opened the doors so widely that there is now no limits on our kids future.

This is a special time and this generation have a chance to grab the opportunity with both hands.

The computer does not discriminate no matter what your physical capability or where you live – you can earn your living online.

Glenn is a self taught entrepreneur of the computer business world and he has the talent and passion to help point our group in the right direction.

The next session will certainly be another eagerly awaited event.

We thank you Glenn and Julia & a special thank you to Jenny Geelen (herself a successful online business woman) and Michael Black who welcomed us into their home for this first event.


What Are The Work Options For Young People With Arthritis?

August 17th, 2009 by Julia

It’s exciting that the internet has opened up career options for young people with conditions that cause pain and fatigue.

This is the theme of a workshop we are having this week-end for several of the teenagers who attend the hydrotherapy groups at the Kidz Clinic.

We are hoping this will be the beginning of a project that explores the new online economy and the different careers that are emerging in this global marketplace.

There are new career options emerging because of the possibilities of the Internet aren’t as well understood by traditional career advisers.  It is also true that even existing careers can take on new forms when combined with specialisation in niches.

Working to earn an income online also mean much more control over the work environment.

Joint pain often puts teenagers at a disadvantage in a traditional working environment, whereas there are quite a few options when it comes to putting together a working environment that is based around a computer.

My husband Glenn and I will run the group. We run an online business, and hope to share some of our insights with the group.


Home and Away Dads

August 12th, 2009 by Rona

How do Dads stay connected and  feel involved when their children are in pain?

Each family will have a different approach.  Let me share with you how my Hubby stays connected.

Now before I tell you what he does I will describe him.   He is my big strong Italian man with a soft centered heart who idolizes his living puppet girls (we have twins with Ehlers Danlos Syndrome).

My husband ensures he has uninterrupted time every week night at 7pm to watch Home and Away with his teenage girls and they talk about just the general stuff that happens in the show.

This is their time and it is a really special time in our family.

One of the Dads downloads popular songs for his daughter’s iPod and his daughter chirps up and says don’t forget Dad, you also do MySpace for me too!

One of the Dads is a carpenter and he builds all the dream pieces that his daughter wants in her make believe fairyland world.

One parent is a Step Dad and he teaches his son the drums.

Dads play an important role in every families life.  If there are health challenges that role becomes even more significant.

Hey Dads – you are treasured more than you know! Take a moment after reading this article and think about what it is that you may be doing.

What can you do to create that special bond in your family?

Rona Chiera -Moore River


Teenagers Set Their Own Agenda

August 1st, 2009 by Julia

One thing that parents realise as their kids get older is that they need to take a step back and watch teenagers set their own agenda.

Managing a painful joint condition as a teenager means learning how to factor in exercise, good diet, school, socialising and stategies to manage pain, medication and mood.

To assist in this, we are arranging a group open to all young people with a rheumatology condition. The group will explore motivation and goal setting in a relaxed and fun way.

We are very excited that Jane Genovese has agreed to work with the group. Jane conducts regular workshops in schools on study techniques and goal setting.

The group will run at 9.30-10.30 on Saturday 29th August straight after the Saturday hydro session. These Saturday sessions will run through to the end of October.

To find out more about the group and to register your interest please go to Get Motivated.


Arthritis Foundation Hydro Pool List

June 10th, 2009 by Julia

Hydrotherapy is a priority for children with a joint condition. Where are the hydrotherapy pools?

Well in answer to my question Stephanie at the Arthritis Foundation has sent a list of the hydrotherapy pools in the Perth metro area. Thanks Stephanie this is a very useful resource for Perth parents.

I hope this list helps you get your child into a heated pool this week. Here is the Hydro Pool List.