It’s been said that stories help conquer fear. At PDSA, we’re committed to telling personal stories from ITP patients, their families and those who treat them to increase knowledge, ease anxiety and provide hope.
Your Voice Matters Webinar - ITP Awareness Week September 2023
A webinar for people living with ITP and their caregivers.
As part of ITP Awareness Week, members from the International ITP Alliance held a webinar for people living with ITP and their caregivers. Engaging talks led by ITP experts including ITP Medical Advisors Dr Cindy Neunert and Prof Nichola Cooper and members of the ITP International Alliance, (Australia, Italy, USA and the UK) exploring Shared Decision Making best practice in ITP care, including personal tips and experiences.
“Behind the Mystery of Chronic ITP”
Lifetime Channel honors ITP Awareness Month
PDSA and members of the ITP community were called on to help raise awareness for ITP on Behind the Mystery, a recurring series on Lifetime’s The Balancing Act which is devoted to rare and genetic disease advocacy. The program dedicated to ITP features PDSA President and CEO Caroline Kruse, ITP patient and PDSA member Brenda Shy, PDSA Medical Advisor Terry Gernsheimer, MD, and Glenna Shen, Head of Patient Advocacy and Public Policy at Sobi, hosted by Montel Williams and Olga Villaverde.
The program was aired on September 6 and 13 in recognition of ITP Awareness Month!
Living with ITP: Patients Share Their Stories
A PDSA Member exclusive, “Living with ITP: Patients Share Their Stories” provides an inside glimpse into the lives of ITP patients and family members about their personal journey with ITP, in addition to expert advice on the mechanisms of ITP and treatment options from PDSA Medical Advisors James Bussel, M.D. and Terry Gernsheimer, M.D. Information about how your membership donation makes a difference in the lives of ITP patients is also included.
Become a PDSA Member and receive a complimentary copy of “Living with ITP: Patients Share Their Stories.” (Please allow three to four weeks for your DVD to arrive.)
The Voices of ITP: Personal Stories for Strength
PDSA believes that the patient voice is central for empowering ITP patients to take control of their disease. We share ITP patient voices here to provide insight into what it’s like to face the condition with courage.
Canadian ITP patient and long-time supporter of PDSA, shares her experiences living with ITP.
As told by his parents Jennifer and Luigi, this is the story of Luca, an ITP Warrior who tragically lost his battle with ITP at age 10. Luca's parents wish to share this story to inform and educate others, in hopes that no other ITP parent will have to go through a similar situation.
Talon’s journey with chronic illness began with an ITP diagnosis at age eleven and now includes other serious health issues and diagnoses.
Caroline Kruse is the President & CEO of the Platelet Disorder Support Association, as well as an ITP patient. In this video Caroline talks about the valuable information, services and community support PDSA offers.
Kristin talks about her journey with ITP and how it led her to become involved with PDSA, fundraising events and raising awareness for ITP.
PDSA Founder Joan Young shares her ITP story and the reasons why she started PDSA.
Jacob has been living with ITP since the age of four. This is his story of diagnosis and treatment, which led to a policy of watchful waiting.
Emily has tried various treatments to control her ITP with different results. In this video, Emily and her family discuss the importance of becoming involved in the ITP community for information and support.
In this inspiring video, the always-optimistic Dale Paynter shares his story about ITP.
Genevieve has been living with ITP for several years, and she wants everyone to know that "with time and patience you can achieve anything you set your mind to."
Ayla was diagnosed with ITP at age three. She and her family discuss her struggle with ITP, and give others helpful advice about living with chronic ITP.
Emily A. has tried a variety of treatments for her ITP over the last several years. But, one of the most difficult things for her is how to explain ITP to her friends.
Learn more about ITP and gain insight from experts committed to making a difference for patients and their families.
Michael Tarantino, M.D. and Terry Gernsheimer, M.D. deliver basic information about ITP. They explain what "ITP" stands for and define acute ITP and chronic ITP.
Information about treating ITP in children and adults, important drug therapy details and why it’s vital to work closely with your physician throughout the treatment process.
Donald M. Arnold, MD, MSc and Emily R. Sokolov, CCPA from McMaster University in Ontario, Canada explain the multiple variables they confront in patients with chronic ITP and the balancing act of treating not just numbers, but also the patient's unique symptoms and circumstances.
Dr. Terry Gernsheimer defines ITP and explains the difference between acute, persistent and chronic ITP, in addition to sharing details regarding platelet production and destruction.
Dr. Bussel has been treating ITP patients since 1981. In this video he explains ITP basics, including symptoms, treatments and living with ITP.
Vanishing Platelets: Issues in Thrombocytopenia
In the following series, Hematologists from McMaster University in Ontario, Canada, explain the multiple variables they confront in patients with chronic ITP and the balancing act of treating not just numbers, but also the patient's unique symptoms and circumstances.
Expert Opinions in Adult ITP Management
Panelists and ITP doctors discuss various aspects of and treatment of ITP.
Expressions of ITP: Inside Stories
Every story is different. Every story makes a difference. We hope you find these stories helpful in your journey with ITP.
Bridget was diagnosed with ITP in her 20's. She is determined to live her life and continue to do the things she loves to do. With the help of her family, Bridget is facing the disease head-on and wants to help others do the same.
Told through the eyes of his older brother and parents, Brady's story is one about the importance of family strength and support when a child is living with ITP.
Jennifer, an ITP patient, talks about the importance of educating yourself about the disease, taking care of you and eliminating stress.
Barbara was diagnosed with ITP at an early age and has lived with the condition for over 40 years. This is her story of life with ITP, including having a healthy child of her own, adopting a child and using alternative therapies to treat her disease.
After being healthy her entire life, out of the blue Trish was diagnosed with ITP. She describes her life since then as an emotional roller coaster and encourages other patients to be determined to beat the disease.
Andrea, an ITP patient, gives helpful advice for those people who have been newly diagnosed with ITP, such as visiting the PDSA website, learning as much about the disease as possible, eating well and having hope.