What does that have to do with anything?

Of COURSE I told my sisters when I was diagnosed with von Willebrand's disorder. They're some of the most important people in my life. Why wouldn't I tell them?

I'd been absent from some meetings already to be at the hospital and whatnot, so the girls already knew something was up. And telling them what my disorder was and how it worked just let them understand why I couldn't be at everything I wanted to be at while I was receiving treatment.

I'd feel dumb explaining "I have crohns and this is what it entails" if someone had already given "the speech" just last semester or something. Of course I'd want to clarify how my case might be different or whatever, but it's not all that uncommon anymore and I don't want to overdo it.

I have been very surprised how many people know someone with Crohn's since being diagnosed myself. You can always ask "Are you familiar with what that is?" before you launch into an explanation. It doesn't have to be some big dramatic speech to the whole group. I would talk quietly first with my Big Sis/Sister-Daughter (whatever terms your group uses) or with your New Member Coordinator/educator (whatever term your group uses again!) and let them know first, in case you have to miss events because of it. Trust me, it's much harder telling your BOSS than telling your sisters!

Dee

To those with Crohn's...
 

Do you mind explaining the difference between Crohns and ulcerative colitis?? My brother has UC, but it was first diagnosed as Crohns.

Crohn's and UC are both autoimmune diseases of the digestive system, but UC only affects the colon (large intestine) and only inflames/ulcerates the first layer of tissue in the colon. Crohn's can affect any part of the digestive system from mouth to rectum and inflames/ulcerates more layers. Crohn's can also include fistulas, which are little tunnels created from the intestines to other organs or to the skin. Crohn's is more likely to create blockages (in part because the small intestine is much more narrow to begin with). The type of inflammation is different also and they can get a definitive diagnosis with a biopsy taken during a colonoscopy.

Crohn's is more serious and has no cure. With UC, although drastic, if the colon is removed, it is gone.

20% of people with Crohn's have family members with UC or Crohn's and 20% of those with UC have family members with UC or Crohn's, so there is a cross correlation.

There is also a condition called Crohn's colitis, which is Crohn's type inflammation occurring in the colon.

Hope that helps,

Dee

I have Tietze Syndome:

"Tietze syndrome is a rare, inflammatory disorder characterized by chest pain and swelling of the cartilage of one or more of the upper ribs (costochondral junction). Onset of pain may be gradual or sudden and may spread to affect the arms and/or shoulders. Tietze syndrome is considered a benign syndrome and, in some cases, may resolve itself without treatment. The exact cause of Tietze syndrome is not known."

It may not sound like a big deal but when the swelling comes on it pushes against my ribs and it hurts to badly it makes me want to puke. Imagine the worst pain you've ever had and multiply it by about 10. That's what it's like.

The shitty thing about it is, it is so obscure and rare that doctors don't know how to treat it or what causes it.