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: 411
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
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: firstname.lastname@example.org