The International ITP Alliance is made up of dedicated patient organisations from around the world, each working tirelessly to support those affected by Immune Thrombocytopenia (ITP).
But who are the people behind these organisations? What drives them, and what do they hope for the future of the ITP community?
This series introduces you to the incredible individuals leading the charge in their respective countries. Through a set of thoughtful questions, we explore their connections to ITP, the most rewarding aspects of their work, and even a few fun facts—because advocacy is about passion but also people.
Name
Country
Organisation
How are you connected to ITP?
Describe yourself in 3 words.
Marilia Silva
Brazil
PTI Brasil – Associação de Apoio aos Pacientes e Familiares de Trombocitopenia Imune
I’m a patient.
Resilient, persistent and a little stubborn.
How long have you been working in your organisation?
In 2016, I started volunteering in the patient support group, and then in 2021, I started the non-profit patient organisation.
What’s the most rewarding part of working with your charity?
I believe that the most rewarding part for me is when I see that I can directly resolve patient and family problems, medication supply issues and provide patients with accurate answers about ITP. Whenever I receive a message from a patient or family member thanking us for our care and saying they are now calmer about the diagnosis, I feel great joy.
What’s your greatest hope for people living with ITP (except a cure)?
My hope is that ITP becomes a nationally and globally known disease by all doctors and scientists and that no more patients suffer from misinformation on the part of doctors and health specialists. And that quality of life is considered in the ongoing care of patients.
Coffee or Tea?
Describe your perfect day.
Blackberry, Blueberry and Vanilla tea
Wake up, take a shower, put on a European film, make some popcorn, then spend the afternoon lying in bed reading my current book. Have a pizza dinner with good wine, do some skincare and sleep.
If you could have a superpower, what would you choose?
If I could choose a superpower, it would be the power of regeneration, to be able to regenerate and heal people and myself.