Breaking Through the Status Quo in ITP

September is a time of year that we raise awareness for ITP, or immune thrombocytopenia, a rare autoimmune bleeding disorder. Not only is September ITP Awareness Month in the U.S. with Sport Purple for Platelets Day on the last Friday of the month, but September 21-25, 2020 is also Global ITP Awareness Week. UCB is joining the strong global community of patients and advocacy groups, including the International ITP Alliance and the Platelet Disorder Support Association (PDSA), to shine a spotlight on the daily experiences and needs of people living with ITP.

We follow PDSA’s lead in wearing purple for ITP, because it represents bravery and signifies one of the disorder’s most distinctive symptoms – bruising. ITP is characterized by the body’s immune system attacking and destroying healthy platelets, causing extreme fatigue and bleeding (e.g. easy  and excessive bruising; petechiae, which is characterized by tiny round dots on the skin; bleeding from the gums or nose; blood in the urine or stool; or unusually heavy menstrual flow). Current treatment options for ITP are limited and can be time-consuming and at times invasive, adding to the negative emotional and physical impact of the disease.

At UCB, we are committed to applying our science, passion and knowledge to help improve outcomes and experiences for people around the world living with this condition. As with many rare diseases, the small number of patients living with ITP or other rare conditions means that identifying candidates to take part in clinical trials can be difficult. In rare disease populations, every scientific advancement matters – no matter how big or small.

Because ITP is an “invisible illness,” a lack of public understanding and awareness can leave many patients feeling isolated and alone. The symptoms of ITP can vary greatly from person to person, and some patients with ITP may show no signs of having the condition or low platelet count. At UCB, we are constantly striving to ensure the patients we serve have a voice and feel seen. All week long, we will be sharing educational resources and elevating the ITP patient experience on our social media channels.

I hope you will take some time to learn more about ITP and help spread awareness by reading our ITP infographic, sharing the community’s posts on social media or wearing purple on September 25, 2020. Find more resources and ideas about how to support the global ITP community through the International ITP Alliance and PDSA.