I started a new clinical trial —and went from a four count before the trial to, in just one week on the med, a 42 count! Joan, I can’t thank you enough. If you hadn’t remembered me and invited me to the conference after my brain bleed, I doubt I would ever have gotten into this trial. I know you can appreciate the feeling of, for the first time in years and years, feeling like “Hot damn, I’m going to be OK.” Words cannot express my joy, or my appreciation for you and for the PDSA. You are the best! I am beside myself with joy and relief and … I don’t know what all, but all good. Thank you, thank you!
I thank God for PDSA. It has been the only place I can find information. The decision is all on me. I pray I am making the right one. My daughter is tired of hearing that ITP doesn’t have to interrupt your lifestyle, when in fact it has made an impact on hers. She is a trooper. As a mother, I just want to feel like I am making the right decision. I wish it was me and not her. Thank you so much for what you do and the support PDSA gives so many of us.
I would like to take this opportunity to thank PDSA for the emotional and educational support you have provided during the past 11 months of my daughter’s journey with ITP. The ride has been wild! We spent hours, days and weeks researching the Internet, connecting with doctors and hospitals, exploring alternative health options (you know the story) … but more than anything, it was your association, your magazine, your articles that provided guidance and peace of mind.
I still remember our conversation some seven years ago when I found your Web site. You were truly supportive and very helpful. I still remain a member of PDSA. I still am on the referral list. If in any other way I can be of help, simply let me know how. I personally am so appreciative of what you do and how you do it. I just hope others do also.
P.S. Great meeting in November. I learned so much and walked away more educated than before I arrived.
I wanted to write to let you know that in your last (before today’s) newsletter, I read something that I found to be quite valuable, and which may prove to be a huge discovery. Since I was diagnosed with ITP about 3 years ago, I have been searching frantically to try to understand how and why I got it. The fear for me was that it may not be a primary disease, but in fact, secondary to some other more serious disease, lurking around the next bend. One of the articles, which described a study about Aspartame and its connection with ITP, sparked some interest for me as I am/was a significant consumer of the product since quitting smoking 3 1/2 years ago. My favorite was Diet Lime Coke, which I admittedly drank in large quantities. After reading the article, I did some further research and learned that many other health issues of mine may also stem from Aspartame use. I found this so amazing, I have since told my family, who have been having similar issues, one of which even had a benign, yet unexplainable brain tumor seven years ago, another linked effect of Aspartame overuse. I write this, though, to thank you for your newsletter and the help in directing me, et al., to this very important information. You are doing valuable work, and I really appreciate it. I am hopeful this has been the answer I’ve been searching for, for
myself and others, as well. Thank you very much.