The importance of diet

Hi all. Every year I feel a little more stronger and I attribute a lot of this to a good diet. Right now I feel a million dollars. I'm quite strict about what I eat and strive for a balanced diet. I also consume a lot of water and don't drink alcohol and have never smoked. I just try to keep it simple: good quality meat, fresh fruit and veggies. I limit the 'junk' and processed foods.

LB.

Myositis Awareness Day!

21 September is Myositis Awareness Day!

Jo's paintings

Hi all,

Just wanted to tell you about an amazing young artist called Jo. She's Australian and she's a JDM survivor! Please check out her work here and 'like' her Facebook artist page:

https://www.facebook.com/JoMorrisPaintings

Regards,
LB.

Myositis Conference - August 2013

I've just got back from attending the Myositis Conference which was held in Adelaide. It was quite a success. I heard some interesting speakers - two speakers came out from America. One was a medical specialist and the other was one of the founding fathers of The Myositis Association in the USA. It was interesting to learn that people are looking at new ways of treating and ultimately trying to find a cure for these diseases. Hopefully I will have the links up for the talks soon. I also met quite a few people with various forms of Myositis from all over Australia. I met some people who are interested in helping out. We are also looking at organising a conference for Juvenile Myositis to be held in Sydney in the future.
LB.

Living with Juvenile Arthritis article

Interesting article I saw online:

http://www.livingwithjuvenilearthritis.com/2013/07/chronic/

MAA Conference - Adelaide

I'm so looking forward to attending the Myostis Association of Australia's annual conference,  held in Adelaide this year in August. I'm looking forward to meeting the children and their families who are going through Juvenile Myositis. Hopefully I can share some of my own experiences and provide a little hope :)

LB.

A new song I wrote and would like to share

Hi, it's been a while I know! First I had a flu that grounded me for a couple of weeks. I guess it's flu season here. Also I've been working on new songs. Here's a little song I wrote a couple of weeks ago. I dedicate this to all of you reading this blog. Hope you enjoy.
LB.

http://www.youtube.com/watch?v=xf4n21Ldqg8

The figures are in from our Charity Golf Day at Club Catalina - (drum roll.........)

We raised just over $6,500.00!!!!

Thank you to Club Catalina for hosting the event and their generous donation of $2,500.00

Help Hayley!

I'm sharing this to help Hayley over there in the USA. She has Polymyositis.
http://www.gofundme.com/2ei8hs
LB.

Over $3,000 raised today at the Charity Golf Day for the JM Joeys! Fantastic!

Arthritis in children - a different form of disease

I found this interesting:

http://www.smh.com.au/national/health/arthritis-in-children-a-different-form-of-disease-20121002-26xdy.html

Courtesy of Arthritis Australia/Juvenile Arthritis

http://www.arthritisaustralia.com.au/images/stories/documents/info_sheets/english/colour/JIA_Brochure_final_091116.pdf

Charity Golf Day for Juvenile Myositis!

There will be a Charity Golf Day for Juvenile Myositis held at the Catalina Country Club in Batemans Bay, NSW, Friday 31 May, 2013, 9am - 3pm. I'll be there if you want to come up for a chat! :)
The details can be found here:

 http://www.catalinacountryclub.com.au/upload/wysiwyg/comimg%20events/Juvenile%20Myositis%20Australia%20entry%20form%20_2_%20wayne.pdf

LB.

 

Article

G'day troopers! Here's an article featuring my inspiring friend Joanne. Joanne suffered from Juvenile Dermatomyositis.
http://www.smh.com.au/it-pro/business-it/working-from-home-campaign-set-for-launch-20121103-28quv.html

I found this on the Juvenile Arthritis Conference Facebook page:

Dating when you're healthy is a challenge on its own. Throw in Lupus or Juvenile Rheumatoid Arthritis and it takes the challenge to a whole other level! How do you approach the dating scene? When do you tell the person you're dating your health issues? Please share your tips for dating with arthritis.

Well, personally, for many years I never brought it up, but now I'm more up front about it. Perhaps I just wasn't ready. All through my teens and early 20s I figured why do I need to explain anything just to satisfy some dumb curiosity? Now I've accepted things a little more and it's often one of the first things I tend to mention. Besides, I've found that chicks seem to dig it when you open up a bit more about yourself and tell your story :) If a girl or guy is not interested, starts to yawn and can't respect what you've been through, they sure aren't worth dating. Good to find this stuff out early. LB. 

A call out to young people who have recovered from Juvenile Myositis and other autoimmune diseases

I've been trying to find blogs of other young adults in Australia who have recovered from Juvenile Myositis and I'm having trouble finding anyone. I'd love to hear from young adults in Australia who have recovered from Juvenile Myositis and other autoimmune diseases such as Juvenile Rheumatoid Arthritis and Lupus. Anyone there?

LB.

These two photos show Lachy at age eight and at age 30. Proof that Juvenile Dermatomyositis could not stop the boy from rocking ;)

Groups involved in JM awareness in Australia

Here is a short list of the good people I'm proud to be associated with:

Myositis Association of Australia
http://myositis.org.au/

JM Joeys, a division of Myositis Association of Australia focusing on young people with forms of Juvenile Myositis:
http://myositis.org.au/jm-joeys

Smart Beads and Stuff
https://www.facebook.com/SmartBeads?fref=ts

Cure JM - an American site which has been a valuable source of help:
http://www.curejm.org/

More groups may be added in due course.

Juvenile Myositis in the media

Here's a story of a little boy and dear friend who has Juvenile Dermatomyositis:

http://aca.ninemsn.com.au/article.aspx?id=8633899

My Myositis Story

I was diagnosed with Juvenile Dermatomyositis (JDM) when I was three years old. Prior to getting JDM, I was a healthy, energetic and active boy. It started off as a rash around my face and soon my muscles in my legs and arms became very weak. It wasn't long before I could no longer walk and I could not perform simple tasks such as being able to dress myself. I was on two forms of medication: prednisolone and methotrexate. 

I have been JDM free and medication free since I was eight years old. I am thirty one now. Every year gets a little better and I get a little stronger and I'm enjoying great health. The road to recovery has certainly been a long one. In the years since having JDM, I have graduated university. I now run a business with my dad, I'm a keen musician and I'm actively involved in promoting awareness of Juvenile Myositis. Through my work I have had the privilege of meeting some amazing people including some amazing kids and young adults, both in Australia and overseas. They continue to inspire me.

LB.

Introduction

This blog has been created to generate much needed awareness of the various types of Juvenile Myositis (JM) including Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM) in Australia. Briefly, these are rare, complex autoimmune diseases that cause inflammation of the muscles and affect children and adolescents. These diseases can also affect the joints, skin and organs. Although treatments are available and recovery rates are high, there is no known cure.

I am hoping that this blog can be of some help to people who are affected by JM. As a former Juvenile Dermatomyositis patient, I believe I can provide some insight into this particular condition.

The help goes two ways, although I'm hoping this blog can help people, we also need YOUR help. We need more people to know more about Juvenile Myositis. We need to educate the public including relatives, doctors, teachers and friends. Together, we can understand Juvenile Myositis better and ultimately find cures to these terrible diseases.

http://en.wikipedia.org/wiki/Myositis

http://en.wikipedia.org/wiki/Juvenile_dermatomyositis

http://en.wikipedia.org/wiki/Polymyositis

To give you some understanding of what it's like to be a teenager with a form of Myositis, Morgan, my friend in America, has put together a couple of videos about her experience with Juvenile Dermatomyositis. Please find time to watch this clip.


http://www.youtube.com/watch?v=TrAZtCST_mU