PDSA has provided exceptional support during my journey with this rare blood disorder. They have provided support groups, education, expert medical advisors, awareness, etc. I have volunteered at the annual conference for over 20 years. PDSA brings together patients, caregivers, and family members. The members and staff of PDSA are like family. They are always there to support you.
The charity is the Platelet Disorder Support Association (PDSA)- and it's hard to know where to start. They do so much for the ITP Community, from maintaining a database of ITP Specialists by state that was an invaluable assistance to me when I recently moved, to the exceptional conferences they put on and beyond. They helped fund the research that led to the first ITP treatments not immune-suppressive in nature- since none of the immune suppressives ever worked for me they were able to put me in touch with a study for one such drug that provided me the first relief I'd ever had, nearly 20 yrs. after being diagnosed. That drug has likely saved my life. The educate patients, they educate doctors, they fund research, they help patients. They give hope, and more.
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!
The PDSA is an amazing nonprofit, a lifesaver for those of us with ITP. They always have up to date information on their website and their support groups benefit all who attend. I facilitate the one in Seattle and have for over 10 years now. They did an amazing job getting all the support groups around the US and Canada online quickly when COVID started and was able to move the yearly conference online as well, not missing a beat. It was so nice to stay connected during that time. Along with keeping the support groups going during the pandemic, they hosted meetings with doctors who could answer our questions about the virus, the vaccine, and other concerns as well. It was a scary time for those of us who are immunocompromised and they were able to ease our worry. When the conferences are in person, they put all of their time and effort into making it an amazing experience with topics that are current and doctors who are knowledgeable about the subject and willing to take time to talk. I can't imagine where I would be without the PDSA. I have been navigating ITP since 2006 and they have been there with me the whole time.
This nonprofit helped introduce me to one of my lifelong best friends! Her name is Cassidy and lives in New York and because of PDSA we were able to meet in Arizona a few years back at a conference they were holding and have been connected ever since! Cassidy and I have been there to support each other during some of our toughest health battles and I truly think she is my best friend soul mate! It’s been amazing to be able to connect with her and so many other amazing people over the years through PDSA that have become friends and family! Watching one another grow and getting to reconnect every few years at the conferences is very special for me and I’m so grateful for all of the memories shared with each and every person I’ve met because of PDSA! I know I could not do this difficult health journey without the help of PDSA and the support of all of the amazing people I’ve met through it!
PDSA does an incredible job of helping those diagnosed with ITP and their family/caregivers. From info about diagnosis and facts about ITP to helping with dr referrals, new treatments and studies, they provide a comprehensive guide to helping ITP patients navigate life with ITP. The tireless work that they do to bring this community up to date information is so important. PDSA uses social media to reach ITP patients as well, offering a platform for patient to patient support, spreading awareness of ITP, and giving helpful facts about what’s going on with continued research. Their dedication to helping to start area support groups, helping run fundraisers, and planning and executing an annual conference for ITP patients is vital!
PDSA has been a vital source of information, support, and peace of mind for my family since my son's diagnosis of ITP. The people involved are more than staff at a non-profit to us, they are family. They have helped us to help others as well, which has created lasting friendships for us. We are growing in numbers as we spread awareness to help our loved ones affected by this frustrating disease. Workplaces and communities are showing up for those with ITP worldwide and I credit it PDSA as the non-profit that started the movement. Any recognition PDSA gets is well-deserved, so please consider them for this honor!
Platelet Disorder Support Association (PDSA) is a GREAT organization. You’ll find helpful resource for patients with Immune Thrombocyto Penia (ITP). PDSA Provides education, treatment information from top doctors who treat ITP patients and a patient sharing forum, where you can talk with others who have had ITP for years. Their National conference is a must to attend and information received is so current, that even your treating physicians probably haven’t learned most of the information about ITP that you’ll learn about there. The opportunity to exchange information with others who face the same challenges is priceless and this organization is the place to go if you, a family member or friend has ITP. By becoming a member, the “Platelet News” you’ll receive is amazing and full of current valuable information and you’ll look forward to receiving each issue, so sign up today and get the best and current ITP information you’ll ever find anywhere. As a patient with ITP for 27 years, finding the PDSA 10 years ago was a life changing opportunity and I’m forever thankful for the continued relationship I have with them. If you’re a patient with ITP, you’ll be so happy when you go to the PDSA website, because the information available there is not available anywhere else to the extent it is available there.