Jump to content

Query: Why Not Just One?


rdslots
 Share

Recommended Posts

Something occurred to me -- why am I having to log-onto different websites to get info, re: dysautonomias?

It really seems to me that ALL of US could get together, and combine our efforts into one unified site. Maybe assess the strengths of each, and use those to our best benefit(s) -- I find myself going to one site for medical info (they seem more professional in a way) and yet another to get questions answered from people like me, suffering with these disorders, and yet another to just hang-out and be myself, the person I am, locked away in this pitiful body?

We could even add some things I don't see addressed other places, like resources for the medical profession, or info for newbies trying to apply for disability, etc. Seems to me we could/should look into something like one site? Is that possible, and has anybody ever explored it before?

Link to comment
Share on other sites

I find this question perplexing. Kind of like, why is there more than one Brand of something.

I think this site and others offer exactly what you are saying folks look for though the DOCS all need enlightening...but that is being worked on as well as one site made CME for doctors.

I think the MORE FREEDOM of sites we have with this illness, who make the computer part of our quality of life issue, appreciate ANYTHING ANYBODY does to draw us in, share info, direct us to other groups for help, give suggestions, etc.

I love having the freedome to see different sites and over the years have seen some collapse and disappear or get so big and overwhelming, they splintered into another site...so who knows why there is more than one but I would NEVER want "only one site or foundation."

Just like there are more than one Autonomic groups for doctors and that is a good thing as well.

So, I guess I have had this illness for so long and am GRATEFUL to have the choice to visit more than one site, I am confused as to why this was even brought up.

I have a few sites to go to to read the news, to see recipes, learn about photography and ask questions...more than one race car message boards...I LOVE having the freedom of book marking different sites on similar issues.

Hope this answer makes sense. This site has great ideas and TONS of info if you just click through the resoursces. Scads of info on getting and MAINTAINING disability here as I have posted and contributed that info that Nina posted long time back.

So, much like I would not want to eat the same food evey day, I like having VARIOUS folks to interact with and share INFO with....DAILY.

Link to comment
Share on other sites

Good point! I agree that more gets done sometimes when you have one large "clearing house" (for lack of a better word) to run things through.

To accomplish that though you have to have lots of cooperation and willingness to work WITH people and it seems we haven't gotten to that point yet.

In time I'm sure things will improve but meanwhile, we'll just have to scramble around to the various sources to find what we need

Link to comment
Share on other sites

It would be a great idea for the very adaptable, but since many people are not very adaptable, it would not be practical.

Not dissing either side, we are all just very different. No matter what kind of site you go to, you will find all extremes in people. Some like no moderation, some like being led by the hand on everything. It's so diverse, that for people to find what they really want, you have to have different sites on the same subjects, or many will be left in the cold, and we all know what that feels like..... :D

Besides personally, I could never wade through a single site, like I can dart through various sites. Just my humble opinion...morgan

Link to comment
Share on other sites

This is just my personal opinion--I think each site has it's own specialization and strives to be the best at what they've chosen to do. For example, DYNA focuses on kids and family issues as they relate to dysautonomia; NIH focuses on reasearch, as does Vanderbilt; NDRF has focused on support and info for patients and is now branching out to provide medical credits; DINET focuses on a moderated support forum for patients and provision of extensive, accurate information on the autonomic disorders that is referenced (and sometimes cross referenced) to research from peer reviewed sources. (I've not attempted to include all the possible dysautonomia resources here, just examples).

In most cases, the groups listed above have leadership that is in good professional contact with the other groups--we refer to each other when another group has something to offer that we know either we don't have, or don't have to the extent of the other place.

Each group has chosen to focus on something or a few things and do them WELL rather than try to be a "jack of all trades and master of none".

Additionally, there are pragmatic issues on expanding services to be inclusive of more content and service areas:

1) manpower

--too few people with the skills needed, with adequate professional and ethical background, and of those who are available, their time may be limited (i.e. doctors or other medical professionals who've volunteered for us to edit and or comment on material Michelle adds to the site's resources, or to print material). Not everyone who has offered to volunteer has the skills we necessarilly need at that time, or has the professional interaction skills/work history needed.

--a solution to the above would be paid staff, which then would also require an office space and physical resources we don't currently have. Michelle and I absorb the costs of things like phone calls and postage all the time, wear and tear on our vehicles to run errands for DINET like picking up info cards from the printer, and going to post office.

2) money

--as someone who actually knows firsthand what DINET has in the bank, I can tell you that we've got barely enough money to do what we do now. There is NO safety net account to handle an emergency, like if Michelles computer crashes and needs repair or replacement to keep this forum and website going, let alone expand.

While I understand the wish to have a "one-stop-shop" for dysautonomia, the current state of the agencies that exist already just doesn't permit that wish to be a reality. That's not to say that someday in the future there might be such a place--just not currently.

Nina

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...