Other Resources & C. diff Support Groups

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Bobbie
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Posts: 11880
Joined: Sat Aug 06, 2005 8:00 pm

Other Resources & C. diff Support Groups

Postby Bobbie » Sat Mar 12, 2016 6:03 pm

Other Resources & C. diff. Groups

Here are some other groups you can look into for further information.
If you know of others, please list them here.

UK SUPPORT SITE FOR C. DIFF.
http://www.cdiff-support.co.uk
Graziella & her brother established this site years ago after their grand mother died of C. dif. Graziella is a nurse (retired) & her husband is a doctor (retired) but they were still unable to save her grandmother.

They are getting lots of PR for C. diff. Graziella found a producer whose father had C. diff. Voila!

I met Graziella several times in London, and we still keep in touch. She is continuing to have good luck getting PR for C. diff. & has been on several radio & TV stations -- including several "host" shows. C. diff. became better known in the UK (largely due to Graziella's & her site's efforts).

One of our moderators, Roy, lives in the UK and is a member of the UK support group as well as ours.

Postby roy » Tue Dec 04, 2007 10:48 am

Hi all I'm new here but have been a member of the UK site for a while and like Bobbie said we got some publicity a month or so back.

Grazziella and her brother are doing a great job and it seems like the site is growing into the major source of info on C.diff in the UK.

Its a group of ordinary people who really are starting to make a difference

Some of us got onto the TV and in the papers I was on BBC news at 10 and they showed pictures of my mum who died 6th Sept 07. Broadcast to the whole of the UK.

On the UK site we have a section where we can post pictures of our loved ones titled "Remembering our loved ones." Pictures of my mum are there entry no 16. Anyone visiting please have a look. Treatment other than by Flagyl or Vanco is almost unheard of here so if the antibiotics dont work then, like my mum, you die! Feel free to browse the UK site. My log in name is the same, and input from your professionals would be much appreciated as we cant get any of our own to speak up!

Regards, Roy

NOTE: The UK site is no longer as active - such a shame. Go to it and you can leave a message and will receive an answer b back.

CHRISTIAN LILLIS' SITE
http://www.peggyfoundation.org/

One of our former posters (Christian Lillis) set up this site after his mother, Peggy, died of C. diff. Check it out --lots of good information here.
Info. also in CDI.

FECAL TRANSPLANT FOUNDATION
http://www.thefecaltransplantfoundation.org.
Many of its members are prestigious doctors/researchers who do FMT's, and you will recognize their names. Dr. Mark Mellow of OKC is a member. I had a FMT from Dr. Mellow in May 2012. He is a charming man and wonderful physician

The organization was founded by Catherine Duff, a frequent C. diff. sufferer. Contact the above hyperlink for additional information and to join.
Info. also in the Doctors forum and listed under LINKS on the home (lst) page.

FACEBOOK
There are C. diff. support sites on Facebook. Even if they say they are closed, apply, and they will accept you. One is titled Fecal Microbiota Transplant (has moderators; was previously called The Power of Poop), and one is called C. difficle - CDI (also has moderators). There are several others. One is FMT & Bacteriotherapy Discussion - Facebook Group -google name. Good research info.

Re: Other Resources & C. diff. Groups

Postby notheidi » Thu Jun 25, 2015 11:18 am

I would like to share this resource that I found that has a c diff internet radio show:

http://cdifffoundation.org/c-diff-radio/

It's kind of nice to listen to when you're feeling sick and alone. I also learned some practical tips for infection/spore control at home, such as don't let your pets follow you into the bathroom.

Bobbie
Administrator
Posts: 11880
Joined: Sat Aug 06, 2005 8:00 pm

Re: Other Resources & C. diff Support Groups

Postby Bobbie » Mon Nov 06, 2017 1:27 am

READ NOW - note phone numbers and prior post

viewtopic.php?f=14&t=19194


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