One patient already contacted us when www.carneytriad.comwas just being launched. We were greatly astonished when a young woman with a complete Carney’s Triad contacted us via our website, as she happens to live only a 25 minute drive from Jasper’s city. What a joy and recognition!! Henriëtte and Jasper met immediately and she went for a second opinion to his own expert oncologist Dr. Winette van der Graaf at Nijmegen.
Since he turned 14, Jasper Smit of the Netherlands has been searching for patients like him. This is very difficult because Carney’s Triad is an extremely rare syndrome. Worldwide there are about 30 known patients with a ‘complete’ Carney’s Triad (GISTs, pulmonary chondromas, paragangliomas). Incomplete Carney’s Triad affects less than 100 patients in the world. This means that they have two of the three types of tumor (mostly GISTs and pulmonary chondromas). In his own words, here is Jasper’s story.