Meet Kylie

I think my story is compelling.  Personally, I don't want your sympathy.  What I would like is understanding and awareness of all sick people.  And why do I not want your sympathy?  Because medical issues aside, I have a pretty good life.  Fine friends, a wonderful family and many other things in my life that I can enjoy.

Now one of the lessons that I try to teach people is when you are sick you need to worry about yourself, and just because there are people worse off than yourself does not mean you forfeit the right to feel sorry for yourself and try all you can to get yourself better.  You do.  Everyone has the right to achieve the best health they possibly can.

But we cannot forget about all the other sick people.  We are stronger when we all help each other, and my heart goes out to anyone who has to battle medical conditions whatever they are.  For example, meet Kylie.  This beautiful girl has been through more in her few short years than most people go through in a life time.  The amazing thing is if you look at her profile picture she still has a smile on her face.  And to think of the stress it would put her parents under too.

The other hard thing in Kylie's case is she is still undiagnosed.  How can you effectively treat something when you don't know what it is and another reason why you need to go and like the Global Genes Project facebook page.  Until next time, stay well:)

Broad Cause

I stand for the Global Genes Project to help people with rare diseases.  I stand for improving the quality of life of all people who are sick.  You can help support me by going to my Broad Cause page and sharing it.

If you like you can also find me on technorati, or you can follow me on twitter @shakesandstones.  If you are really nice to me to you can add me as a friend on facebook or you can join my circles at google+.  Just send me a note saying you are following my blog.

But if you do one thing today, support me supporting the Global Genes Project at Broad Cause.  Stay well:)

Global Genes Project

Well 2011 is drawing to a close and I have a great idea to help you finish 2011 on a good note.  Click on the link below and then click 'like' to help support the 'Global Genes Project'.  It will take you less than 10 seconds, and yes.  That is a challenge!

http://www.facebook.com/globalgenesproject

For more information you can see my previous post here.  Stay well:)

Global Genes Project

This is a message that I am going to put on facebook, send to all my e-mail contacts and promote over google plus. It is a cause I would really like to draw attention to, and I hope that the content of the message will explain why. I have kept it generic so anyone can cut and paste it and send it to their address book, facebook contacts etc. I think it could potentially help a lot of people.

Do you know anyone with a rare disease? The chances are you do. You probably look at them and thank your lucky stars that it is them, not you. You probably want to help but don't think you can because the condition is so rare. You also feel that the condition is so rare that it won't happen to you. Well, here are some facts to give you something to think about:

1. There are over 7000 diseases in the rare disease database.
2. 350 million people suffer from a rare disease.
3. That's 1 in 20 or 5% of the world population.
4. If sufferers lived in one country it would be the 3rd largest country in the world, bigger than the USA.
5. Less than 5% of rare diseases have any therapies or treatments.
6. 75% of sufferers are children.

Individually, having one of these diseases can feel very lonely, but as a collective, sufferers may not feel so isolated. The Global Genes Project exists to raise awareness for those children and their families affected by rare disease, educate the world about genetics and it's link to rare disease, and fund innovative 'in their lifetime' research and therapy development.

Right now, The Global Genes Project is on a campaign to spread awareness about rare diseases.  They don't want your money, they just want you to like their facebook page.  More to the point, they want one million people to like their facebook page.  You can do so by clicking on the following link:

http://www.facebook.com/globalgenesproject

With your help we can make a difference to change the quality of life to 350 million people world wide.  So you can help.  It is up to you!

Thank you.

Please feel free to copy this message to your friends, family and acquaintances.  The more the better.  Until next time, stay well:)

Rare Diseases

Do you suffer from a rare disease.  Well let me tell you from personal experience, it can feel pretty lonely. I suffer from two rare diseases, CIDP and cystinuria.  If you discount the online community do you know how many people I have met with CIDP?  Easy, nada, nil, zilch, zero.  Yes, a big fat doughnut!  For cystinuria, the answer is one.  That is my brother and genetics would have played a big part in that.

But you compare all rare diseases, there are an awful lot of them.  Did you know that 350 million people suffer from a rare disease worldwide, which is about 5% of the population or 1 in 20 people.  If all the people afflicted by a rare disease lived in one country, it would be the third most populated country in the world, and would have more people living there than the USA.

However, there is a group that specialise in drawing attention to and funding rare diseases.  They are trying to raise awareness by getting 1 million people to like their facebook page.  You could help me and 349,999,999 other people by doing so.  Please forward the message on to all your friends too.  The link is here:

Facebook page

You can learn more by visiting their website here:

Global Genes Project

Until next time, stay well:)