Orphan disease my big toe!

So, I don’t like that phrase…”Orphan disease”.  Not at all.  I’ve been running in circles trying to find advocacy groups, etc.  None of the rare disease organizations have any!  Well then HOW THE CRAP DO we get one started!?

Anyway, this post is not to rant about that…I will get something done, somehow, someway.  But, I wanted to see if anyone could give my friend some love.  Here’s the blog link and I haven’t figured out how to do the hotlinks (?) yet on WordPress so you’ll just have to copy and paste or find the link on my blogroll.  The blog title is called, “Beating Cowden’s”.  Would you read the blog?  If you have time, if nothing else – it will help you understand what I’m going through too.

And I want my new virtual friend to feel some love.


PS, and I hate the term rare disease too.  I feel normal.  I don’t want to be sick!  I guess I always associate disease with sickness and that doesn’t help my anxiety either. 😦


One thought on “Orphan disease my big toe!

Let's chat!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s