Awareness IS Important!

 February is Evans Syndrome Awareness month. Why is awareness so important? Simple, if people don't know about it they can't do anything about it. 

Did you know that Autoimmune diseases are the #3 cause of death in the US? #1 is heart disease; #2 is cancer; #3 autoimmune.  Do you know that people with compromised immune systems are at a higher risk to have cancer? Well, now you know.

Awareness means, hopefully in the near future, ALL doctors will know about Evans Syndrome and when we walk into an ER nurses and doctors know how to deal with these patients without us having to give them a lengthy explanation (or give them time to google this...true story!)

Awareness gives us the chance for someone out there to have the

 curiosity to look into this and research it. To find a course of treatment that is correct so we don't have to treat it in trial and error mode. Do you know how many times we hear "we will start here and if that doesn't work we will do this and if that doesn't work we will do some other thing." Do you know the emotional toll that takes on someone?  The wait and see game? Do you know the toll it takes on their bodies with the crazy side effects of these medicines?

Awareness allow us to tell you all this. Often, this disease is described by doctors as a roller coaster because one day you'll be fine and the next day hell can break loose. If we have the right medication, the right tools to see how we can prevent the next downfall Evans' patients will be able to live longer and enjoy life a bit more.

Two people have died from this disease in the last month. One has been sent home to hospice in the last week. This shit kills people! Although Evans is manageable, there are still these reminders out there that this can kill you. Period. Simple as that. You get an infection and your body can stop producing white blood cells or platelets and then BAM! Dead. Do you know that if your platelets fall below 15,000 your brain can spontaneously start bleeding? What do you think happens then? You fucking die! Because no brain surgeon goes near brain surgery if patient's platelets are below 50,000!!! Much less 15,000!

The state of New Jersey has passed a resolution to have an Evans Syndrome Awareness Day on Sept 21. This is HUGE! I encourage the Evans Community to reach out to their senators and make this happen in all 50 states in 2015!

Dealing with Evans sucks. Sucks so bad. It is up to us to make it suck a little less!