moderated Re: Suggested Feature - Provide email "call" for a message by specifying the message number


Bob, I totally agree with you about that. People with scary medical conditions, and even people with cats with scary medical conditions, are lucky if they have the presence of mind to increase their internet skills, no matter what level they were at in the first place. Patience is of the essence.

On Sun, Mar 24, 2019 at 10:31 AM Bob Bellizzi <cdfexec@...> wrote:
A non-internet savvy user has become a member of a patient advocacy and support group because they have just been delivered a diagnosis of a very  rare disease and the busy, busy specialist is not a good communicator.  They were told "Go to the Internet to find out about it."   Really, this is a frequent occurrence.

If you have never had a medical diagnosis that threatened your independence or way of life or was otherwise life changing you would understand the panic and stress it brings on and that damn specialist only had t5 minutes for me?

They need information and support and ask the same questions that have been answered many times over decades but they are new to all of this and really aren't interested in the finer points and existential usages of

They're not used to much in the way of the Internet and at this point further instruction in its' finer points will turn them off because their goal is information about what's next, etc., not internet education.

We have 20 years of questions and answers now and we would like to utilize some of our library of excellent answers for their education and to get them to understand that many others "have been there and done that".  Telling them to go to our group and look at message #160233 won't cut it but sending them that message of how someone else handled it will.

The Mentors supply a level of group-experienced help and are picked for their role because of attributes like patience, communication skills, patience and ability to ferret answers from our archive.  They help newbies transition into the system providing answers and help and a great deal of stress relief for panicked people.


Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


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