Advocacy

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
Tinkal2000
New User
Posts: 7
Joined: Tue Dec 10, 2013 4:22 pm

Advocacy

Postby Tinkal2000 » Sun Feb 15, 2015 4:27 pm

As a victim of C-Diff, I have become friends with a number of people with infectious diseases. One of my friends on FB is a victim of Lyme Disease. Sheila is advocating a postage stamp to promote Lyme Disease awareness, She has received a lot of support for this, as Lyme Disease affects all parts of the body, as does C-Diff. I have all the information to lobby for this, and if you are interested, please PM me on FB. My name is the same handle as here, tinkal2000. I would really like to start an awareness of this disease. I have suffered numerous health problems as a result of C-Diff. Lost all of my teeth due to the malnutrition, memory loss as a result of 15 hospitalizations and anesthesia last year and this year, falling due to loss of muscle strength, on and on. I really think we need to take the awareness of how horrendous this disease is to a higher level than just the web.

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Advocacy

Postby Bobbie » Mon Feb 16, 2015 12:56 am

Tinka,
Earlier you PMd me the following: Bobbie, I have not been on the site for quite awhile and received a new password today. It is too long and complicated for this C Diff mind. How does one make it easier?

I PMd you back but had computer problems so think PM was lost. I answered, "You probably mean a new username as you chose the password. If you have problems remembering, write things down. Hallmark sells a "password" book or you can make your own.

To answer your question about making Lyme Disease a part of this support group, I don't think it is a good idea. I am sure Lyme's patients have their own web sites they can use to lobby. C. diff. is enough for this site to handle.

I am sorry about all your problems post C. diff. Many of us have had similar experiences. Not a lot of fun. I hope you can start exercising to regain your muscular mass. If your doctor writes a prescription for a physical therapist, your insurance will probably pay for it. Start exercising slowly and work up. It won't "cure" your c diff but it will help you feel better mentally and physically.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Advocacy

Postby roy » Mon Feb 16, 2015 6:28 am

This site's policy is to remove any fundraising posts.
Raising awareness is one thing but we do not approve of raising money to raise awareness.
I have never heard of c.diff causing teeth loss or head problems
I did something to raise awareness in UK
I took part in a March on Parliament., a memorial service for those who died (including my mom) was held at Westminster Cathedral in London
I appeared on BBC national TV
Gratziella arranges a dinner function and got all those that matter from Dr's to TV personalities, nurses to Lords, cleaners to MP's together to talk c.diff
Other members of the UK site all did a lot as well
Over 2 years the deaths from c.diff almost halved and I am talking about many thousands of lives that c.diff did not claim.

Misscshell24
Long Time Contributor
Posts: 420
Joined: Wed Sep 10, 2014 3:41 pm

Re: Advocacy

Postby Misscshell24 » Mon Feb 16, 2015 11:48 pm

There truly does need to be more awareness about c diff in the community and medical field. Prevention and awareness. It would be great if things that were done in the UK, that Roy mentioned, were done in the US and all around the world with similar results.
Michelle


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