My Nonprofit Reviews

The PDSA has been a lifesaver for me during my ITP journey. Once I tell you my story, you will see the reason why very clearly! I was diagnosed with ITP in 2013 during my Medicare physical. It showed I had low platelets so my primary Dr. referred me to a hematologist. After much testing, he determined that I had ITP. But unfortunately, he didn't give me any information about the disease, and I was forced to go to the internet. And because of some of the test results, he referred me to a rheumatologist as well, and he determined that i also had Lupus. Again, I was shocked at these results as I didn't feel sick and didn't look sick. But when I search the web, I found the PDSA, and it saved me! Nowhere had I seen so much information about ITP, and they had a list of Drs. on their website that were specialists in that field! I read everything on their site and was excited to see that they had yearly conferences held in different cities. I told my husband, "I'm going to Cleveland to the 2018 PDSA conference! And I'm so glad I did! I finally met other people with this disease, was able to be in small talk sessions with these wonderful Drs. I had read so much about! I met other people who thought they were dying, just like me, because their drs. didn't explain much about it, but now I know why; they just weren't taught about many rare diseases in med school, so unless they had a patient with ITP, they didn't know alot about the disease! The conference also had a session about how to be an ITP Facilitator, and I also went to that session, as I wanted to be able to meet other people with this disease and start a Support Group to help them! I found out that these meetings help me too! I started an ITP Support Group in The Villages Florida in January, 2019, and the PDSA was very helpful with that! They have helped me with Zoom meetings during Covid, and even had their Drs. on staff to be on some of those meetings to answer questions! They certainly went over and above during the Covid situation! In 2017 I also got diagnosed with triple negative breast cancer, very aggressive, so I had to do the whole treatments, surgery, chemo and radiation. Talk about a triple whammy! The PDSA was very supportive during my treatment time! And they are very supportive when I have my Support Group Meetings, sending me brochures and magazines for the people in my group! I didn't receive any of this info when I got diagnosed, so I made sure all my hematologists have them to give out now! I have had 2 fundraisers for the PDSA because I am so grateful for their support, and want to thank them and help them with their research in finding a cure for this disease! I could not have done any of this without the PDSA! They have saved me! Marcia Freed I have a video and photo but couldn't download it, sorry!