Understanding and recognizing the real-life impact of little understood conditions: We highlight Global ITP Awareness Week
Posted byDanielle Hartigh, Rare Disease Patient Engagement
I was recently speaking with a patient who, for almost 30 years, has lived with immune thrombocytopenia (ITP) a life-changing rare blood disorder that causes painful bruises and uncontrolled bleeding. Before her diagnosis she considered herself a healthy young woman with a career in the armed forces. Since then, she has re-organized her life to adapt to her condition, which she describes as debilitating, challenging and often a rollercoaster of emotions.
With ITP, a malfunction in the body’s own immune system causes it to attack and destroy certain blood cells known as platelets. Platelets are crucial to the blood clotting function which prevents bleeding when you cut or bruise yourself. This means people living with ITP typically experience numerous blueish black marks on their bodies where small knocks have caused extensive bleeding. They may also suffer debilitating fatigue, as well as psychological symptoms such as depression and anxiety. As became clear from my conversation, the physical and emotional impact of living with ITP and the isolation which can accompany it can take its toll.
Despite there being over 200,000 people living with ITP worldwide, very few people know about the condition. This week, together with the Platelet Disorder Support Association (PDSA), the International ITP Alliance, ITP Support UK, and many other patient organizations around the world, UCB is recognizing Global ITP Awareness Week (September 20-24, 2021, with the full month of September being recognized in the United States). This awareness milestone helps amplify the voices in the community, so that people living with ITP can feel seen, heard and supported. To take part, people can participate in planned activities, including the Sport Purple for Platelets Day on September 24th, where supporters are encouraged to dress in purple to highlight the purpura in the disease name, as well as ongoing research into the tools and education needed to further research participation.
While every condition and every patient is unique, the rare disease community is united by shared challenges: a lack of awareness; diagnosis difficulties; and potentially life-threatening obstacles to care. At UCB, we are more determined than ever to invest in research and partner with the community to spread the word about patient participation in clinical trials – with greater public awareness, more patients living with rare diseases can be involved, meaning better understanding and, in the future, potential improved treatments to improve lives.
Although living with ITP has meant an abrupt change in her lifestyle, during our discussion, she shared her hope for the future. She now works as a volunteer for PDSA and, rather than allowing the condition to define her, has been able to access the information needed to contribute to clinical discussions with informed knowledge and transparent information regarding research.
“For me it has always been important to control the ITP rather than let it control me,” she says. “I take a holistic approach to my health and have tried all sorts of disease management techniques and treatments. There are major ups and downs for anyone with this condition.”
Volunteering to participate in a clinical trial means individual care and attention is offered to the health needs of all the people involved. Clinical trials can help the community learn more about the condition and improve the chances of access to better treatment for everyone.
This week, join us in recognizing this important global awareness milestone in ITP by liking our social media posts, encouraging those living with rare diseases to share their story, and contributing to the advocacy-led conversation. You can also find more resources and ideas about how to support the global ITP community through the International ITP Alliance, PDSA and the ITP Support Associate (UK).
Thank you for your help in honoring the network of patients, caregivers, physicians, and industry partners working together to improve outcomes for those living with ITP and other rare diseases.