ITP Awareness Month focuses attention on rare bleeding disorder
Walks, social media, purple landmarks are part of month's events, activities
Patients, caregivers, medical professionals, and other advocates are coming together in September for Immune Thrombocytopenia Awareness Month to raise awareness and support for a rare disease that’s estimated to affect more than 200,000 people worldwide.
Immune thrombocytopenia (ITP) is an autoimmune disorder marked by a loss of platelets, the circulating cell fragments needed to help blood clot after an injury. This leaves patients susceptible to various forms of internal or external bleeding. Considered a rare disease, ITP has an incidence in the U.S. of about 3.3 cases per 100,000 people.
Leading the way is the Platelet Disorder Support Association (PDSA), a patient-founded organization started in 1998 to educate and empower those with ITP and other platelet disorders, and that established September as ITP Awareness Month in 2010.
“ITP Awareness Month is a chance to shine a light on a condition that’s often misunderstood or overlooked. It’s about giving ITP a name, a face, and a story,” Melissa Hilsabeck, PDSA’s director of outreach and community engagement, said in an email to Bleeding Disorder News.
Pump It Up for ITP
This year, patients and advocates can “Pump It Up For Platelets!” either virtually or in person to raise funds for research. The events, which include walks and runs, are taking place throughout the month across the U.S. and in London. Sanofi and CSL Behring are national sponsors.
Participants are also encouraged to visit the Platelet Store and find jewelry, clothing, mugs, visors, books, and other ITP awareness items. Patrons enjoy 20% off their purchases for the month.
PDSA is asking community members to wear purple — the color representing ITP — and to snap a selfie and share it on social media for Sport Purple for Platelets! Day on Sept. 26. Advocates can also donate, host a fundraiser, or become PDSA members to support the mission and get more involved.
Global ITP Awareness Week events
The International ITP Alliance, an international partnership of ITP patient support organizations committed to education, awareness, and establishing a global voice for ITP patients, is hosting Global ITP Awareness Week, Sept. 22-28, with the theme “Shining a Light on ITP.”
Advocates can download Global ITP Awareness Week signs, logos, and graphics to post on social media with the hashtags #LightUp4ITP, #ITPawareness, #Global4ITP, #Purple4Platelets, and #PaintThePlanetPurple.
PDSA is providing a social media toolkit that contains instructions for advocates to “Light Up” a local landmark purple during ITP Awareness Month, Global ITP Awareness Week, or Sport Purple for Platelets! Day as part of #LightUP4ITP. The organization is also encouraging participants to submit their personal story for a chance to be featured in an upcoming ITP Warrior spotlight.
“For a rare disease, to hear someone say ‘I have ITP’ or ‘I know someone with ITP’ is empowering for patients who live day in and day out with this disease,” said Caroline Kruse, PDSA’s president and CEO.
The U.K.’s ITP Support Association, another organization of the International ITP Alliance, is urging landmarks to be lit up in purple across the U.K and Ireland as part of #LightUP4ITP campaign. The association is providing a template supporters can use to request a landmark lighting on Sept. 26 to mark Sport Purple for Platelets! Day.
“This global event raises awareness for ITP and symbolizes the bravery and hope of patients. Last year, hundreds of locations around the world participated, lets get the UK and Ireland lighting on this year — helping to shine a light on this rare disease,” the association states on a webpage.
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