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Friday, March 30, 2012

How much does it cost?

In this case just five minutes.  I have really been putting the hammer down recently on my blog about my CIDP and the really exciting advances being made in stem cell research.  But I have two really nasty rare diseases that effect me.  The other one is cystinuria and I must admit, I haven't been giving it the time it deserves recently.

And there are a few reasons for this.  FIrst, I am right in the middle of the throws of my very own stem cell transplant that I hope will be the answer.  As this is happening I am constantly researching this treatment, which gives me a great deal to write about.

Second, this procedure could be the answer to autoimmune diseases in general, and if not, it has been a giant leap in the right direction.  What is happening is really exciting and I believe that even if it doesn't work for me, the fact that it has worked for many others is proof enough that the procedure is definitely worth while.

But while cystinuria is taking a back seat it is certainly not forgotten.  If you ask me which one is worse the genuine answer is they are probable about the same.  They are very different which makes it hard to compare.  Most days I'd say CIDP by a nose because it is in your face everyday from the moment you brush your teeth in the morning, to the time you put your pyjamas on at night.  But when I'm symptomatic with a stone, cystinuria is way worse.  The pain, nausea, discomfort, lack of sleep makes it almost unbearable.

And I'm sure cystinuria will have its day in the sun.  The research is happening.  Scientists are making giant leaps forward every year with genetic research.  Maybe the answer will come from stem cells, maybe not.  I don't know.  What I do know is that eventually the answer will come, the question is when?

So what can cystinurics do now.  I believe that there are many factors that increase the priority of which disease gets priority and the research dollars, but the main two are prevalence and severity.  The nastiest diseases and the most common ones normally get the attention but there are other smaller factors.  Now, we cannot change the severity of the disease.  It is what it is.  And so is the prevalence.  But we can change the perception of prevalence.

And I don't mean by dishonest or underhanded means.  I mean as cystinurics we should make sure we put up our hands and are counted.  Not doing so is like being a political activist who doesn't vote.  At the end of the day you can scream and yell as loud as you want you still won't be heard.

So how can cystinurics be heard.  It is simple, sign up to the cystinuria registry.  The link is below:-

http://medicine.med.nyu.edu/nephrology/research/current/join+the+cystinuria+registry

I must admit, I have been slack in doing so, I have only just done it.  But I have done it and that is what matters.  Doing so will not only provide doctors, researchers and scientists with valuable information, it will also give us a voice.  If you have cystinuria do this to help yourself plus everyone else with cystinuria.  Until next time, stay well:)

1 comment:

  1. Thank you for this post and your blog! I had no idea a Cystinuria registry even existed. I just found your blog while out searching aimlessly for answers to my Cystinuria diagnosis. I can see you are going through a lot and must be a very strong person. Thanks for putting yourself out there for others.
    Beth

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