Thursday, January 6, 2011

Researching your own condition- Heal Thyself!

Author: Penny Rorrer, DTP Patient

Have you ever seen the movie "Lorenzo's Oil"?

It is a true story about a young boy names Lorenzo Odone who had a rare condition called "adrenoleukodystrophy (ALD)", a disease that had no cure, no treatment and was horrifically fatal.

His parents REFUSED to accept that, so they researched the condition, they searched into WHY their son had a demylinating disease, what was causing it and what could be done.  They did not just take the 'experts' word for it, they asked questions and basically taught themselves how to be bioengineers to save their son.  They found the missing protein chain in the rapeseed, searched for a researcher willing to extract it and refine it... and not only saved their son but children around the world.  They did not find a cure, but they found a treatment that worked!

We should not sit idly by and wait for some researcher with no personal stake in our future to decide if it is worth it to comb through all the information available on DTP conditions and hope that one day they will run into each other at a conference or Starbucks and compare notes.

We need to gather all the information FOR them...we need to do the surveys FOR them... we need to collect all the information we can, compile it, make links and connections that they might have missed and find a researcher that is willing to look at all the information we compile and see if there is SOMETHING that is a major factor... an "ah-hah" moment... our rapeseed.

Will it be easy... no way!

But someone has to start the battle, someone has to gather the troops and say "we are at war and we have to get all our Generals together or we will never win!"

The truce is over... Idiopathic is NOT a diagnosis, it is a cop-out!  "We do not know what causes it, so lets try this to treat it" is a crime.  You would never allow a mechanic to tell you "I don't know why your car keeps breaking down, lets just keep putting this $500 oil into it and hope for the best, and if that does not work we can always try another $500 oil"!  No, we would demand a repair for our money...why should we expect less for our bodies?

Search the Internet... find every paper submitted to medical journals, every report of medical trials, every document you can...share them with others and compare them.  Somewhere out there is OUR rapeseed... become your own physician, then "physician, heal thyself".