If you're living with a chronic illness, you're in the right place.

Saturday, November 3, 2012

NHBPM #3: Building Networks

1:57 PM Posted by Tiffany Taft , ,
Today was our 2nd day at the CURED patient education conference and we heard from a slew of medical professionals, patients, and parents.  Steph and I presented to the adult patients about quality of life and parents about caregiver stress.  I really enjoy speaking at patient events because it brings all of the work that we do in academia to those who can truly benefit.  As we know, knowledge is power.  But from our presentations it became very apparent that there is so much more that needs to be done, on all fronts, but especially in the psychosocial realm.

Something basic that needs to be done is to compile a list of mental health professionals who have experience with and knowledge for working with adults, kids and families affected by EGIDs.  And make this list readily available to patients and parents so if they decide they can use some help, they can feel comfortable that who they're reaching out to will have at least heard of (and can pronounce) Eosinophilic GI disorders and have some background in helping these clients.

We realize that EGID is a very small niche in the bigger context of chronic illness...

So I'm starting with if you are a therapist, or know a therapist who has expertise in working with people living with chronic medical illness, let us know.

Even better, if you are or know a therapist who has experience working with chronic digestive illness, please tell us.

And if you are or know a therapist with EGID experience, please please reach out to us.

It would be great if we could have names in every state, ideally in multiple parts of the state.  This may be a lofty goal, but we have to believe that they're (you're) out there.