Written by Barbara Louvrencic – ITP Warrior, President of AIPIT Italy

Shared from UK ITP Support Association The Platelet published in November 2022.

The title could already be a story “ITP- in viaggio con Werlhof” in English “ITP- a journey with Werlhof” is an awareness campaign promoted by Sobi Italia with Aipit aps Onlus support.

Aipit aps Onlus is Italian non-profit association of ITP patients and caregivers established in 2010. Sobi Italia is Italian branch of Sobi – Swedish Orphan Biovitrum AB pharmaceutical company specialized in rare disease drugs.

Not all ITP patients know that Mr. Paul Gottlieb Werlhof, who was German physician and poet, was the first physician who supplied the clinical description of ITP in far 1735.

In a way our entire life with ITP could be considered as a journey with Werlhof.

Surveys about quality of life of the patients with ITP had shown that sport activities are the most affected by ITP.

The general public and also some healthcare providers are not familiar with ITP and its real impact in life of patients with ITP.

For many years there were few treatment options for patients with ITP, immunosuppressants, IVIG and splenectomy but ten years ago TPO mimetics arrived giving us an opportunity to get better care and improve our life with ITP.

The aim of “ITP- il viaggio con Werlhof “campaign is to bring awareness about ITP to the public and also to celebrate research progress that provides better treatment options for the patients with ITP. Research has made it possible that many ITP patients can live more fulfilling and free life.

Ambassador of the campaign is Mr. Mauro Pelaschier – well known professional sailor who won numerous gold medals in the Olympics and winner of Americas cup with “Azzurra”.

For the first time in a history, thanks to Mr. Pleaschier’s experience, five patients with ITP, Barbara, Cecilia, Gabriela, Simone e Maurizio were part of the crew of the sailing boat that participated in historical regatta “Mille vele” in Genoa that was held on 24th September 2022.

Patients with ITP often describe their life with ITP as a storm. ITP-inviaggio con Werlhof 2022 experience was a perfect reflection of our life with ITP.

During the preparation day’s the crew had beautiful weather with sun, calm sea, and wind just enough to offer a perfect sailing experience for inexperienced sailors.

On the day of t
he regatta itself the weather conditions were rain, gusts of wind over 20 knots and rough sea, so bad that one of the sailing boats that took part in the regatta sank.

Barbara said, “Just as it happens in our life with ITP, under expert guidance, we made it! And we made it well! Thanks to Mr. Pleaschier’s spotless guidance of the entire crew we made it to 4th place in our category and 12th place in general ranking of 228 sailing boats. It was experience of the lifetime and bad conditions made it even more special!”

ITP- in viaggio con Werlhof 2022 pushed the boundaries so hard that the most important information agencies of the country passed the news and the rest of the media followed.

ITP has many secrets yet to be revealed through research and by raising awareness for ITP is a fundamental goal of all for us.

For more information about this fantastic journey, visit ITPInViaggioConWerlhof.it/

For more information about AIPIT Onlus visit AIPIT.com/

AIPIT is proud to be a member of the ITP International Alliance GlobalITP.org

Share your ITP story today. Visit ITPAustralia.org.au/share-your-story/