Hi all.

As you know I go to the Neuropathy support groups every month. The man who runs the meeting, my friend Steven (who himself has CIDP), just phoned me and asked me if I knew anyone (a female), with CIDP.

It seems that one of the IVIG magazines (perhaps IG LIVING??), needs to interview a female with CIDP who would be willing to participate in an interview ( I don't know any details), and share how CIDP affects their traveling.

I told Steven I would post this question on this forum. If any women with CIDP would be interested in being interviewed about their travel experiences, can you please reply here, and I'll let Steven know. I will then private message you his contact information. I think he just needs one person, but I'm not sure. You can correspond with him via email or phone (whatever is easiest for you). He will then give you all the information about being interviewed.

I've known Steven for many years, and we meet once a month at the CBS building.

Maybe one of you can help other people?

Thanks much

melody

There is NO ONE with CIDP, who frequents these forums?? I've got to go some place and post elsewhere. If anyone knows anyone, let me know okay?

And I hope it was okay to post the question. I tried doing this on another message board at HealthBoards (A CIDP MESSAGE BOARD, no less). and I got banned the next day for "taking a survey".

I didn't take any survey. Good Lord, you tried to do something to help someone and they ban you.

lol

'IG Living'? Or 'Neurology Now'? I occasionally view IG living; but rarely NN, because they seem to have little of interest regarding PN or Immune neuro PN issues. David H from BT is also now a consultant there and at other resources... Not one I'd consult tho!
IF you could find out more specifics? I'd like to know. Especially who is doing research?
I do know that the GBS/CIDP foundation is doing phone and in-person surveys for that issue but only if they are members. Initial requests for volunteers did not state male/female preferences.
Thank you Mel, for this info, but more would be needed. - j

I don't have any other information other than what I put in the post. I will write to Steven, show him your post and see what he says.

I'll update as soon as I get any info from Steven.

Thanks much

Melody

I'd like to know....truly... Are you sure? Please tell me so's I can spread it elsewhere besides here. Thanks Mel!

I met several women in his waiting room w/ CIDP. Plus, he does IVIG infusions. Steven might want to ask if he could post a notice in the office to see if anyone would be willing to participate.

Well, I gave Steven the link to this thread, and I gave him your questions. Now it's up to him. I haven't heard back but it is the weekend and he might be out of town.

When he checks his email, he'll get back to me.

I will then update. And as for Dr. Latov, we have MANY people from the support group who go to Dr.Latov's office, so Steven knows about Dr. Latov. As a matter of fact, Irene, (who used to run the meeting, but is now ill), well HER doctor is Norman Latov.

Interesting, no???

So when I find out ANYTHING, You'll find out too!!!

Take care

Melody

Someone will get back to you! IVIG Living used to contact me almost every month for interveiw, and even though I have been disagnosed with genetic instead and no longer use IVIG, they stlll contact me alot..... they'll find em!

Hi.

Topic is now closed. The time limit has come and gone. So if you want to pm me, you can do so.

melody

Hi All.

Deadline is now closed. So no more will be forthcoming.

Thanks to you all who responded.

Take care

Melody