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. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
Thank you received: 470
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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