I realize that diseases like cancer,heart disease,ALS,Parkinsons,and others garner much more attention than any of the orphan diseases like APS,EDS,POTS,and so many others.However,I am suffering from APS,and it has caused me heart problems,lung problems,it has affected my brain due to the fact I have seizures,plus so many more.Yet,so many health professionals haven’t a clue as to what it does to a human body let alone know what it is.
Why is this?If so many other diseases can garner so much research money then why not study these orphan diseases that may contribute to the more well known diseases.I do not understand the thinking behind this,nor do I understand why not just the misconceptions but the out and out distortions that have been put out there to some of these diseases.
I was not diagnosed until 2003,but had been sick most of my adult life.I suffered migraines that would keep me in bed for days,pain that was constant,trouble with speech,small backouts,and then full seizures,rashes that would not go away yet no one seemed to know what they were.
Instead I was told I may have Mad Cow Disease,one Neurologist actually had the termerity to suggest that I needed more sex.Now these were given without any testing, nothing more than things coming off the tops of their supposedly well educated heads.Give me a BREAK!
How can any Orphan Disease ever hope to gain recognition if medical experts either are not aware of a lot of these diseases or they are looked at with such scorn and dismissal?
If medical experts are not willing to even look at what the consequences or correlations could possibly be between orphan diseases and diseases such as cancer,heart disease,strokes,brain dysfunction etc then what future really does medical research hope to gain?I know APS causes strokes,heart problems,brain dysfunction due to seizures,pulmonary embolisms and so many others because I have all of them.So where are the experts now?
If we are to further the treatment of any disease wouldn’t it be smart to see what the connection may be?We already know that genetics play a big role in a lot of them,so why not study what makes it so or try to futher the research for gene therapy?
I guess the bottom line of this,is that there are far too many questions and it is sadly apparent that anyone who may have helped to garner support for any of these orphan diseases either has no desire to do so and to the millions of sufferers of these orphan diseases that we will just have to keep knocking the walls down of apathy and the status quo of doing nothing.