Project Arthur

There’s a bear with a white head and a furry brown body. He wears a blue shirt with Kids Arthritis on it and black pants. He has two big blue eyes and one massive smile. This is the very special Arthur the Kids Arthritis Bear.

Most of us have a toy from our childhood, mine is Arthur. Arthur and his massive smile would join me for hospital appointments and operations for my Juvenile Arthritis. When I’d enter a ward after an operation the smile on Arthur’s face would make the other children and nurses smile as well. He also gives the biggest cuddles that makes all the pain disappear.

This is why when I founded Australia's First and Leading organisation solely dedicated to supporting the 1 in 1000 children in Australia living with Juvenile Arthritis, Kids Arthritis. It was a no-brainer to make Arthur the cute, cuddly and official mascot of Kids Arthritis. Which is how he got his name: Arthur the Kids Arthritis Bear.

Arthur now brings smiles and offers hugs to children all over the world living with Juvenile Arthritis. So much so that now I’ve decided to turn Arthur into a heat pack and give every child in Australia living with Juvenile Arthritis their own Heat Pack Arthur by 2021. This will mean that now Arthur the Kids Arthritis Bear will be able give children living with Juvenile Arthritis a nice warm hug to relieve their pain.

There are no words to describe how incredible this feels that my favourite childhood bear is having the same impact it did on me, on other children living with Juvenile Arthritis. If you’d like to change a child’s life living with Juvenile Arthritis and give them a Heat Pack Arthur: www.kidsarthritis.org

Loosing Sight..

At the beginning of 2017 I shared with you all about “The Day I Lost my Sight”. Through writing this about my blindness in my right eye due to my Juvenile Arthritis that began in my teenage years, many reached out to me and Kids Arthritis to share their stories and access support.

During October 2017 I visited my Opthamologist, had some scans of my eyes and this was all fine, but the result wasn’t.
Once again I was back in the big blue chair and on the screen were the images which had been taken.
What happened next, changed my life.

On the screen, I saw the scan of the back of my eye and what was showing were some tiny
‘bubbles’ in the left eye (my seeing eye). These bubbles aren’t friendly bubbles, they’re Macular Degeneration.

The look on the Opthamologist face said it all.

Surprised, upset and unsure of how this could come about. All the medical treatments are
supposed to prevent this from happening, but still it has occured.



But you know what I did in that moment. I didn’t get angry or upset. I thought about the 1 in
1000 children in Australia living with Juvenile Arthritis. About how much pain they’re in right now and everyday, thinking they’re the only ones living like this. I also thought how much they need someone like me who can stand up for them living with Juvenile Arthritis and Kids Arthritis tosupport them and show them that it’s going to be ok.

Medical professionals don’t know yet when my sight will disappear, but what I do know is that with your help we can ensure that more children living with Juvenile Arthritis, who could be going through this situation don’t need to do it alone.

National Juvenile Arthritis Month

“What does wearing blue mean to you?”

Is the question I’ve been asking children that live with Juvenile Arthritis over the past few months.

“Wearing blue means that people do care about the pain I’m in each day.”

“My friends can see that I’m not ashamed of living with Juvenile Arthritis.”

These are just two of the many answers I received.
Why was I asking children that live with Juvenile Arthritis this?
October is a very special month in many ways for myself. It’s the month Kids Arthritis celebrates its

 2nd birthday! The month we hold Australia’s Biggest and Bluest Night for Kids Arthritis, Arthur’s Big Blue Night, but it’s also National Juvenile Arthritis Awareness Month.
Blue is the colour of Kids Arthritis. It represents the courage and smiles that children living with the pain of Juvenile Arthritis have. This October I invite you to wear your favourite blue shirt, socks, jacket, dress, anything that’s blue to show that you support children living with Juvenile Arthritis.

It’s a simple thing you can do to support the 1 in 1000 children in Australia living with Juvenile Arthritis. I also encourage you to upload your blue outfit onto social media to show me, your friends and family online that you support children living with Juvenile Arthritis.

Now, what does the word ‘support’ mean when living with Juvenile Arthritis?

To me, a lifelong severe suffer of Juvenile Arthritis, it means that the people around me in my community, whether that be online or the Adelaide Hills. Want to be there and show that they care about the pain, stiffness, and isolation that children living with Juvenile Arthritis endure.

So, this October I invite you to wear something blue to show that you support children living with Juvenile Arthritis.

Winter and Juvenile Arthritis

“It’s cold.”

Is the usual beginning to conversations during winter, but a side to Juvenile Arthritis that many don’t know is how this weather effects our condition.

There are many different types of research done into weather and Arthritis. You only need to jump online to see, but there’s not much there in relation to Juvenile Arthritis and the weather. So I decided to undertake my own research through Kids Arthritis to see if I was the only one being effected this way.

“How does the weather affect your Juvenile Arthritis, Sarah?”

Is a question I’m asked when speaking at community groups or conferences about Juvenile Arthritis. The answer can sometimes surprise people. The weather plays a huge part in my condition. Each year until my 13^th birthday I was admitted to hospital for surgery in September/October due to inflammation and pain in my joints that needed to be removed. The fact that it was the same time of year every year made me always wonder, 

“I’m sure I am not the only one.”

Turns out I’m not and through the research, I undertook through Kids Arthritis, I found that a high percentage of those I spoke with had the same issue.

The beginning of Winter is when the pain is most severe during Winter. Swelling appears and your reliance on medication to get through the day becomes more prominent. Once again, this isn’t just something that happens to me, it’s happening to a high percentage of children living with Juvenile Arthritis in Australia.

 If you ever meet a child or adult living with Juvenile Arthritis rather than asking them,

“How are you?”

Ask, “Do you have any pain today?”

This shows to us that you do care and want to know how we’re really feeling.

Life with One Eye

At the beginning of 2017 I wrote a post sharing, ‘The Day I Lost My Sight’. I thank those for their questions and words of support, but there was one question asked by many readers: 

“What’s it like living with vision in one eye?”

This is a common question I get asked, as it’s a problem that many may never have to experience.

In the beginning simple daily activities; reaching for a glass of water or shaking someone’s hand were a huge problem. This was due to the depth of field issue. My brain had to re wire itself in how it saw the world and how far away objects were. 

Time went by when driving at night become an issue. I hear from older adults that they give up driving due to feeling unsafe on the road or those car headlights are too bright. I was 20 years old and had to give this up, something I’d worked hard to gain that gave me independence, but had to give up due to something I had no control over, Juvenile Arthritis.

Another impact was that the world I see is darker than others as there’s only light entering one eye, rather than two. This means when in rooms with dimmed lighting it’s disorientating and I can become light headed and everything that’s part of that feeling.

By far the biggest impact has been the risk of the condition that caused this in the first place, Uveitis affecting my left eye. If and when this happens, no one knows and what effect it will have on my life we will see at the time. But I never let any of this hold me back from achieving my life mission: “To change the way the world views Arthritis.”

My Favourites

This months blog has been inspired by one of our KAWarriors who asked me a very important question at our last Support Group.

"What are two of your favourite sweet foods to cook?"

They then went on to tell me about their favourite ones which consisted of chocolate chip muffins and fruit salad stick. 

I had to stop and think for a moment about the answer as I love cooking many different foods. If you're a friend of mine you'll know I love surprising them with muffins or slice. To either say thank you or just put a smile on their face. 

I get my love of cooking from my father. I remember being a child and waking up to the smell of pancakes on the weekend and trying to guess what flavour they might be. Banana was and still is my favourite covered in ice cream and fresh fruit. They would be in different shapes and letters, but always made with love. 

Now that I'm older I still love my dad's pancakes, but enjoy making them for him on the weekends. Covered in maple syrup with juicy fresh fruit! 

My other favourite sweet treat to create is no other than my Grandma Oinn's banana cupcakes (are you seeing a pattern here?)

They are so easy and sometimes I even had a hint of chocolate chip or sultanas in there to mix it up. 

Both are incredibly easy to create and so delicious that you can't help, but share with others around you!

Eating a healthy diet is so important to everyone, but when you live with Juvenile Arthritis it's even more important. The statement: you are what you eat, is incredibly true and should be remembered on a daily basis when making food choices.

If you would like any of my two favourite recipes, please let me know as I'd love to share them with you!

JIA and Me

Through Kids Arthritis I've been able to begin many life changing and Australian First Education and Support programs and events to the children, their families and children all over the world living with Juvenile Arthritis. 

This has only happened because of people just like you. Yes, you reading this blog but, what you're really doing is learning more about Juvenile Arthritis which now means you are now an advocate for this hidden yet common condition. 

There's one Australian First program that I'm really proud of. It's not our School Support Program or our Online Support Group. It's our Southern Support Group.

Why?

Well all I ever wanted and still want is to meet others living with Juvenile Arthritis, no matter their age or severity of the condition. Like thousands of others around the world, I just want to meet others like me. This is so I can share with them about my condition, my highs, lows and just know that someone else actually understands what I have to live with everyday!

I know I'm not alone as everyday I hear from children, their families and carers just looking to connect with others just like them. This is why Kids Arthritis Southern Support Group means so much to me.

What I would have given just to have a group like this growing up. I know it would have made a huge difference to my conditions.

If you're reading this and live with Juvenile Arthritis or know a family who does. Please invite them along to Kids Arthritis next FREE Support Group: www.facebook.com/events/241781209598283/

Not 'Just a Girl' Anymore.

November 26th, 2016 the last Kids Arthritis Board Meeting for 2016. 

Kids Arthritis Board Members.

Sarah Hammond, Arsene Iribuka, Marjorie Hammond, Jenny Bennett, Rhys Jarrett, Brett Freeman

At this time I'd just been nominated for Start Up Adelaide Volunteer of the Year and was waiting eagerly for the ceremony. We also took a moment to look back on how far as an organisation we'd come. Everything that we'd achieved in our first year as Australia's First and Leading organisation, Kids Arthritis. 

Start Up Adelaide Volunteer of the Year Award.
Brett Freeman, Sarah Hammond, Mathew O'Donorfrio.
                                                                                






We just held our second annual Christmas Celebration for children, their families and careers living with Juvenile Arthritis and looking forward to the afternoon as it was our Board Christmas Lunch, but volunteer afternoon tea.

                                                                                    Emily, Sarah, Arthur the Arthritis Bear, Lucy.

You could say I was pretty happy and we were all excited about what we've all achieved together to Change the way the World views Arthritis. When in fact it was just the beginning to the excitement that was coming in 2017!

Monday 23rd January, 2017. Australia Day South Australia Awards 2017.

The day I was named South Australian Young Citizen of the Year. Not just nominated, but actually won this prestigious award. 

It was a great feeling knowing that finally after 23 years of living thinking that not many cared about what I lived with and doing through Kids Arthritis, everyone finally wanted to know and help out! The phone didn't stop ringing and emails kept flowing with interviews, letters of support and most importantly. Children, their families and carers reaching out and sharing their story living with Juvenile Arthritis. 

The awards didn't stop there. Next came Mount Barker Young Citizen of the Year and Mayor's Achievement Award on Australia Day 2017!

The best part of all this?

Not only was my family there, but supporters of Kids Arthritis and children who live with Juvenile Arthritis. This is extra special because these awards are not for me. They're for the 1 in 1000 Children in Australia living with Juvenile Arthritis. Everything that I do in my life is for them. For their families and careers as well. As I don't want any child, family or carers living the way I had to growing up.

To watch the videos or see everyone's smiles at both these exciting events, please head here: www.facebook.com/kidsarthritis

Just remember that "the ones who are crazy enough to change the world, are the ones that do."

Arthritis and Time Travel

Let's go back in time. 12 months ago to be exact and take a look at what life was like at the end of my 21st year living with Juvenile Arthritis. 

Thanks for an Amazing 21st year!

I don't know about anyone else but on my birthday I not only enjoy celebrating the past year of my life, but thinking about all that I have achieved.

This year I was 21 years old and looking back, Wow I have achieved some pretty amazing things for someone of my age with my type of disability. 

Not only have I started an organisation that is dedicated to supporting Children living with Arthritis. 

I have also been successful in not needing an infusion every 4 weeks and a tablet every morning to stay alive, rather just the little yellow tablet.

Come into contact with some amazing KAWarriors who suffer with Arthritis everyday and who have been supported by Kids Arthritis (Yes you, Emily and Kristy!)

Organised and hosted my very own event, Big Blue Night in support of Kids Arthritis.

Began Life Bursts, a radio show every Wednesday from 4pm to 6pm on Hills Radio, with my wonderful other host Matt and had fun learning everything radio again from Crash!

Created hundreds upon hundreds on Facebook, Twitter and Instagram posts all in support of Kids Arthritis.

Raised over $3,000 in support of Children with Arthritis.

Taken way too many selfies on my SnapChat, some even ended up on instagram; www.instagram.com/kidsarthritis

Thought Bitstrips were cool and annoyed all my friends with them.

Consumed too many cups of lemon tea while eating fresh fruit with oats, I say fruit with oats as there's always more fruits than oats.

Celebrated birthdays and deaths of love ones this year (this includes my pet chickens and ducks).

Had fun #Pranking4KidsArthritis with Rhys from RawCut and spending too much time infront of the camera telling lame jokes. www.youtube.com/pranks4kidsarthritis

Helped so many amazing people achieve their health and fitness goals through my Health and lifestyle group and personal training not only in my home town but Adelaide too!

www.facebook.com/sarahfitnessechunga


and the most important one.

Learnt that others do really care about my story, my pains and how I want to support Children with Arthritis. Before this year it was so hard but I thank everyone who has been apart of my life this year because you have helped shape me and made me believe that I really can change the world through supporting other children just like me with Arthritis.

Until next time.

Keep Smiling as you never know who's day you'll brighten.

Some of the wonderful Ladies Only Morning Fitness Class.








Myself and Emily at The Ethelton Entertainers Peformance this year. www.facebook.com/EtheltonEntertainers

"Arthritis doesn't just effect the elderly, it effects children too..."
Me at Big Blue Night for Kids Arthritis this year.

I love bringing Bursts of Peoples lives to our listeners every Wednesday on Life Bursts with Matt.
It's one of the highlights of my busy week.

Biggest and Bluest Night in Australia

Arthur's Big Blue Night is Australia's Biggest and Bluest Night in support of the 1 in 1000 Children in Australia living with Arthritis.

It's a lot of work, no wait. It's a MASSIVE amount of work that goes into create this Big Blue Night for children living with Juvenile Arthritis.

Just like Kids Arthritis Australia everyone involved is a volunteer and the event is no different.
Volunteers or as we call them, KAVolunteers come from all over the country to volunteer their time for Kids Arthritis Australia. 

This year is very special as it is our second annual event and we are having LIVE local acts at the event! Local harpist and guitarists will join us this Saturday night. The biggest LIVE act is Katie, KAWarrior who battles Juvenile Arthritis will once again bring joy to all who attend through her piano. 

The yummiest part of the evening is all the delicious local produce that is served to all that attend. These delicious sausage rolls, cakes, sandwiches, everything you could ever image. Are made by local KAVolunteers for the guests to enjoy. You never go home hungry from a Kids Arthritis event!

Inspirational Speakers will grace the stage sharing their journeys battling Juvenile Arthritis and what it's really like living each day in pain. 

There's an auction, live music, fresh, local home baked food, inspiration and the Auctioning of the famous Kids Arthritis Quilt!

It's a night out for the whole family and it's happening THIS SATURDAY from 7pm!
If you can't attend but still want to make a donation, please head to the Kids Arthritis website.

I look forward to seeing you all on Saturday! 

How to Find Your Passion

I have always wanted to create change and awareness about Juvenile Arthritis. My mother and I spent many years of my life trying to create it but, it just never happened. 

My Uncle retired a few years ago from the job he spent 42 years doing. Each day he'd travel 3 hour trip to get to and from work. Why did he do it? Passion. He enjoyed his first and only job he did since finishing school all those years ago.


We all have passions. 

It could be creating delightful cakes for family, like my friend Tiffany.
You could love spending time modifying and creating your dream car, like my friend Brett does. 
Maybe you love the bus trip into work, the people who surround you in the space and what difference you make through the role you do, like so many of us do.

I spent many years searching for a way to do my passion.

When the suggestion of creating Australia's First organisation was talked about, it was always put down as 'too hard' by those who were supposed to be helping me.

While completing high school I tried to get ahead of the others and study Health and Fitness at an adult campus, while completing schooling. Once I finished school I was accepted to work at my local gym. From there I got another job at two local childcare centres, as I thought these were my two passions. I make it sound so easy to get these roles, but it wasn't. To learn more, read my other post about Disability Discrimination.

Turns out I was wrong and when it was time to lay off workers, I was the first to go.

After this I started my own Health and Fitness Business which I ran for a little over two years, before running a charity and business became too  much living with Juvenile Arthritis, which one of them had to go.

From that moment I was able to focus more on supporting Children living with Arthritis. I don't get paid for any of the work I do. If I speak at community groups, events, conferences, etc and receive a donation in return. It goes straight to the Australian First Support Groups that Kids Arthritis Australia run.

Each week I spend just over 30 hours changing the way the world views Arthritis, but why would I do this if there's no money value in return?

Passion.

Supporting the 1 in 1000 Children in Australia living with Juvenile Arthritis just like myself, is my Passion.

These children need support, their families, careers and siblings need support. They need help and awareness of this common yet hidden condition they battle everyday and who better to do this than someone who's battled it for her whole life.

What's your Passion? Let me know on Facebook.

www.kidsarthritis.org

What do I Ask the Doctor?

Since the invention of Google in September 4th 1998, people have been jumping online to self diagnose. 

This is incredibly risky and I don't recommend anyone do this. 

There's a reason doctors study for many years, so that they can treat you in the best possible way. Even though my life experiences with thee medical professionals haven't been the best, I owe my life to them. Without their knowledge and skills I wouldn't be here and you wouldn't be reading this. 

When a child is first diagnosed with Juvenile Arthritis there's so many questions racing through the heads of those involved. In this weeks post I have compiled through my experiences with JIA a list of questions to ask your health professional.

1. How will the Juvenile Arthritis be treated?

This one is the most important and should be asked first. There's many different methods and your doctor will know which one is best for the child.

2. How can the other symptoms be managed?

When your child has Juvenile Arthritis (JIA) there will be many symptoms that your child will show. Every child' JIA is different, so this question can only be answered by your doctor not, Doctor Google.

3. Is there any activities that my child do to relieve pain and swelling?

Exercise for anyone is important, but what's important here is that you are refereed to a physiotherapist or other health professional by your doctor to manage these conditions.

4. What causes JIA?

A common question that you can find a more in depth answer here. 

5. What if symptoms come back?

Symptoms may come and go when living with JIA, but having a trusting relationship with your doctor will make this easier. Stay in contact when ever you can with your doctor and seek advice from other support organisations.

6. Will my Child always live with JIA?

All my life I waited until I was 16 years old, as that was going to be the age my JIA would disappear. It didn't, but I still wait for the day it does disappear. Even if it does I'll still be left with the side effects. Every child is different, so keeping in contact with your doctor is most important.

7. What medicines might treat this condition?

There are many different medications available, but each one is different just like the children who require them. Some do sound 'scary' but, the one thing we do know is they can help. Once again your doctor know best and they'll know what is suitable for your child. 

Always remember there is now support out there for you. I began Kids Arthritis Australia as there was none when I was growing up with JIA. If I didn't begin the organisation, children their parents and careers would still be living like I did. Isolated and alone battling this hidden yet common condition. 

Little Red Dots

It's not the Juvenile Arthritis that impacts you the most, it's the side effects.

I've had and still live with many different side effects due to my Juvenile Arthritis.

Minor things like hair loss to extreme fatigue and Lupus, but the one everyone sees the most. Those little red dots.

What are those little things?

Well for starters they're far more itchier than mosquito bites and take 10 times longer to heal.

They get worse before they become better and are in the most annoying places. 

Two years ago I had a sample of one of these little dots taken. It was the most painful thing I'd had done to my skin awake. The result from that was medication side effect.

If you've read my previous posts you would know the only medication that can give me the relief I need currently is Meloxicam. A medication that's eating my stomach lining, but means I can walk. Factors like spending time in the sun (the tiniest amount), covering up my skin for extended periods of time (in winter) makes them worse. There's no way to get rid of them and covering them up makes it worse. 

There not only over my arms and back, but the part everyone looks everyday. FACE. 

With the power of make up the ones that aren't oozing or sticking out like Mount Everest can be covered up. As for those ones.. Cleaning my face twice a day, keeping my hands away while there's no make up on and drinking plenty of water, seems to do the trick. 

Living with Juvenile Arthritis is much more than just painful joints and taking medications. It's dealing with people judging you about something on your skin that you have no control over. 

20 Something Living with Arthritis.

When you were in your 20's what adventures did you get up to?

I'm sure some of them you'll share with your children, and there's others which you won't.

My adventures living in my 20's will be shared with them and are being shared with you right now through this blog. 

I googled Things to do in your 20's and realised that many of them are just too hard to accomplish when you live with Arthritis. 

The number one activity they suggest is travel.

As a kid I spend every school holiday at our family beach house and every winter one somewhere warmer in Australia, but never overseas. I've never been in a commercial plane or even overseas. 

Why is this?

When you live with an autoimmune disease you can be restricted by your medications. Live Vaccines are normally a NO GO ZONE, while the thought of having to stop taking my medication for around 8 months just to have a vaccine to travel overseas, to me doesn't seem worth it.

Of course some day I wish to travel, but for now I'm very happy changing lives through Kids Arthritis Australia.

The next thing on those lists is usually, Live on your Own.

How? How? How? Is a 20 something living with a crippling auto immune disease supposed to do that? This one is pretty self explanatory if you've read my other posts.

Reading all these I've created my own list of things for 20 somethings living with Juvenile Arthritis.

1. Listen to your body.

If it's feeling weak and you're feeling fatigued. Stop. It can be hard, but make time for yourself. Whether it's reading a book or enjoying a cuppa, make time for yourself.

2. Be honest to your doctors.

Yes, that's right. If you really did have a flare on the weekend or skip your medication last Wednesday. Tell them. Your honesty really matters when it comes to your health and well being.

3. Eat Healthy, but make sure you spoil yourself.

This advice comes from my Personal Training Business days. Our bodies always need good nutrition, but sometimes due to our medication we may crave salty fries or ice cream (this was my problem after infusions). Give yourself those foods, but only in moderation. 

4. You come First.

You always come first when living with Juvenile Arthritis, as self centered as that sounds it's true. If you're not feeling up to going shopping with your friend, tell them. If you're just to tired to attend a celebration at night, tell them. If you don't, they won't understand about your pain and Arthritis.

5. Create a support network around you.

Not everyone in their 20's living with JIA want to share their journey with everyone like myself, but it's important to find people to share it with. These people could be your mother, sister, support worker from an organisation (like myself), coworker, local minister, the list is endless. Just find a group of people you trust, because there's always people who care about you.

What's your advice for 20 somethings living with Juvenile Arthritis?

Share it on my Facebook. 

Growing Friends

Being a kid is hard.

Think of all those times you spent in the school yard, playing on the playground or attending friends birthday parties. What can you remember? 

I can remember attending many birthday celebrations. I remember being that kid who's mum stayed and helped out as you never knew when my Juvenile Arthritis would become painful or swollen. I never stayed at sleep overs or at the celebrations for long as it was always too much on my tiny Arthritis crippled body. This lead to friendships being hard to maintain.

Why was this?

Juvenile Arthritis. 

The only people I could trust that understood what was going on was my family. 
I was so afraid that I'd hurt myself or suddenly everything to be painful and no one would be there to help me. 

Being older and looking back, this is due to the lack of awareness there was and still is surrounding Juvenile Arthritis. Since beginning Kids Arthritis Australia I have learnt that I'm not the only one with the above problem. Children, their families and careers are hesitant to let go of their child living with Juvenile Arthritis as others don't understand what it's really like. 

Through Kids Arthritis Australia I will change this.

This is a National problem, that if not fixed will become worse in the future.

Being a kid is hard, but living with a hidden condition makes the easiest things in life, like attending your friends birthday party hard.