1 Million People for RARE Diseases

RARE disease day is on the 29th of February, which is now just a meagre 30 days away, and the first big push for 1 Million for RARE is starting with the blog hop.  Directly below this you will find the RARE logo.  The link will take you directly to their facebook site.  We are after 1 Million people to like their page.

http://www.facebook.com/globalgenesproject

So why should you like their page?  Here are some facts for you to think about:

There are over 7000 diseases in the rare disease database.

350 million people suffer from a rare disease.

That's 1 in 20 or 5% of the world population.

If sufferers lived in one country it would be the 3rd largest country in the world, bigger than the USA.

Less than 5% of rare diseases have any therapies or treatments.

75% of sufferers are children.

If you pick one of the rare diseases, there is a good chance that you have never heard of it, or know anyone that suffers from it.  But you will know some of the diseases on the list and maybe even sufferers. Below is a bunch of links to other blogs of people who suffer from a rare disease, or care for those who do.  Each person has a heartfelt and compelling story.  It makes you wonder what you can do to help?  Well now you can do something.  You can simply like their facebook page.  In case you are interested, you can read my story here.

Alone, each disease seems quite insignificant.  Its cry for help not just drowned out be the 7000 other rare diseases, but the high profile diseases that many are afflicted with.  Well, it is time for a change.  With the current advancements in research, the mapping of the human genetic code and the treatments that have sprouted hence, there is no reason why we cannot develop treatments to turn the tide on these diseases.  To improve peoples quality of life.  To save lives.  Instead of everyone making their own noise, we can all club together to sing in harmony.  A resounding chorus of 350 million people that cannot be ignored.

Ironically, there are some treatments out there that could be used to treat other disorders, it is simply that nobody has thought to do it.  I have one example that has effected me personally.

There is a doctor practising out of North Western Hospital in Chicago.  His name is Richard Burt.  Years ago he was working with bone marrow transplant patients and he noticed that patients post treatment were being given their childhood inoculations all over again.  Why?  Because effectively their immune system had been reset.  So he had the wonderful idea that if a stem cell transplant reset the immune system, why couldn't it be used to treat an autoimmune disease?

And that is where I am at.  One of my rare conditions, CIDP, is an auto immune disease, and on the 18th of February I am headed off to Chicago to hopefully be accepted into Dr Burts' trial.  Now at the moment, this is a trial, not an accepted treatment, but patients have touted it is as a cure even though the doctors involved are a little more reserved.  I will be blogging about the whole experience right here, on Shakes and Stones.

The point is stem cell transplants have been around for forty years and this treatment is still not available as a main stream treatment for auto immune diseases.  In the mean time people have suffered and died.  So what other treatments are out there that could potentially be used for other diseases that we don't know about?  Unless we draw attention to all rare diseases collectively we will never know.  So like the facebook page.  350 million people will thank you for it.  Stay well:)