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lisas444

I have a daughter with Sclerosing Mesenteritis, diagnosed in 2008 at age [...]

Posted by @lisas444 in Digestive Health, Jul 31, 2014

I have a daughter with Sclerosing Mesenteritis, diagnosed in 2008 at age 14, and a pretty aggressive form of it unfortunately. We have a pretty amazing support group that we started with 57 members in it to date last year. If anyone with Sclerosing Mesenteritis or Mesenteric Panniculitis wish to join or find out more information about it, please respond or email me. It's a wonderfully based support, sharing, all forms of SM and MP are discussed and shared, it's a private group so won't post it here, but rather, contact me and I'll get you to where you need to go! We talk, share, newbies are greatly welcomed with love and open arms, great files and information, meds discussed, treatments discussed, and also creating a state wide database as to what docs will treat SM in the states we're all located in. My kiddo has had 17 abdominal surg with this dreaded disease and she is inpatient frequently, an ostomy now as well as there are others on our group as well, and again TPN dependent, as well as some others on our site are as well, some aggressive forms, some fatal, some mild, and some in the middle of this disease. We'd love to have you!

Erin11 likes this
angel11

Posted by @angel11, Aug 20, 2014

Hi, I am interested in joining your support group. Please let me know how. Thank you very much.

lisas444

Posted by @lisas444, Aug 21, 2014

Erin, I sent you an email with all the info! 🙂 Thanks! 🙂 Lisa

Erin11 likes this
angel11

Posted by @angel11, Aug 21, 2014

Thank you!!! :))

grneyedgemini

Posted by @grneyedgemini, Apr 12, 2015

Hi My name is Teresa from Georgia. . i was diagnosed today and have no idea where to start . I was told its rare..the hospital did not have information in the system to send hime with me explaining what I have. I am to follow up with a G.I. Doc this week. I very nervous. ANY and all information would be greatly
appreciated. I would like to join your group as well....thank you

kelseydm

Posted by @kelseydm, Apr 13, 2015

Hi Teresa. @lisas444 would be the best person to tell you about the group, but here is some more information about sclerosing mesenteritis: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/basics/definition/con-20037148. Hope this helps!

lisas444

Posted by @lisas444, Apr 13, 2015

Thank you. We got Teresa over this am.   We have about 90 members and a wonderful support group. Thx 🙂

Sent from Yahoo Mail on Android

From:"Mayo Clinic Connect"
Date:Mon, Apr 13, 2015 at 9:29 AM
Subject:Kelsey Mohring | Community Manager mentioned you in a post - "Hi Teresa. @lisas444 would be the best person [...]"

lisas444

Posted by @lisas444, Jul 17, 2015

We have 112 members in our group now! 🙂 Welcome!

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