I've been thinking of sending her a private message. I think she still checks the boards but doesn't reply very often anymore. Don't know who Carolyn is, but you could send a private message to either Sandi herself or Jeff or Carolyn.
I think Carolyn is the site owner -- Sandi herself mentioned her on my thread when we were talking about an app for the site where people could track symptoms against treatments... I will send her a PM!
you know the problem could be financial instead of medical. maybe she wants to get compensated for the work she does. i mean she does a lot of work here she is all over this place posting. whatever the reason it's a BIG loss.
Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
Thank you received: 388
I noticed the lack of posts by Rob16. Such a shame he was so helpful when I was first using this site.
I notice there is a pdsa Facebook group too. I wonder if any of them post on there. I haven't joined it, I'm wary about Facebook and it's invasion of privacy
Mrs. B, there are 2 facebook pages. I joined the wrong one at first but finally found the right one. I am a member and do post there once in a while. Haven't seen anyone from here post there. Unless on Facebook, they are members under different names and I don't recognize them.
I popped in here to see if Sandi resurfaced. I hope she is doing well and just choosing not to participate for whatever reason. If you're reading this Sandi, know you have made a positive difference in so many lives.
The following user(s) said Thank You: mrsb04, Hal9000
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