Share something you learned from another Health Activist (that everyone should know).

First I think you need to read this post from Amanda http://stopthinkingstartwriting.blogspot.com/2013/04/we-know-our-bodies-best.html

I am using this post as a good example.  I have known Amanda from online only.  We were introduced through another activist.  When we were introduced, Amanda had been sick for some time and couldn’t seem to find a diagnosis.  She presented with symptoms of IBD but no GI could seem to find anything.

Throughout time, she would have her good days and her bad days.  But through it all Amanda would not give in.  Even when doctors would tell her nothing is wrong she would fight and look for another doctor.  Eventually some diagnoses would come it but they wouldn’t be the big one she was needing.

Now, she finally has the diagnoses she was waiting for and reason everyone should know this.  She has Mast Cell Hyperplasia (consistent with Mastocytic Enterocolitis).  Now most of you, and I was one of them, probably have never heard of these terms..but Mastocytic Enterocolitis is a form of IBD.

Many people think IBD is only Crohn’s Disease and Ulcerative Colitis.  Those are the 2 main diseases but there are others.  ME is one of those others.  I have often only talked about the former two.  Now I have another disease to learn about and possibly talk about.

I look forward to learning another form of IBD and I look forward to our newest IBD Warrior and her challenges to now beat this disease and heal up.

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This is being added after this post was already posted.

I have done some research…and was shocked to read what I did.  Turns out Mastocytic Enterocolitis (ME) isn’t IBD.  It is similar to IBS.  ME isn’t chronic and is very treatable.  Here is one link that is reputable:

http://rarediseases.info.nih.gov/gard/10176/mastocytic-enterocolitis/case/24223/case-questions

Amanda, I don’t know if maybe you were led astray by a doctor.  Just know that I and many others still care and hope you do get better.  From the looks of it, you will and real fast.  The treatment is a simple one and I wish all disease were easily treated like ME.

I am sorry if I offended anyone that took offense for me saying it was IBD.  I didn’t do the research ahead of time and just got excited that Amanda had a diagnoses.