Friday, 28 February 2014
International Rare Disease Day 2014
The theme of International Rare Disease Day 2014 is “Join Together for Better
Care.” As patients and caregivers who have been impacted by peritoneal
cancers (Appendix Cancer, Pseudomyxoma Peritonei, and other Peritoneal
Surface Malignancies) our organizations have chosen to join together to share a
simple message about these diseases.
This year’s Rare Disease Day Ambassador (http://ow.ly/tQj4T), Sean Hepburn
Ferrer, lost his mother Audrey Hepburn to peritoneal adenocarcinoma in 1993
at a time when she was offered precious little treatment or hope. Over 20 years
after Audrey Hepburn’s experience, one of the greatest challenges with these
diseases continues to be correct and timely diagnosis and access to the
Standard of Care: cytoreductive surgery plus hyperthermic intraperitoneal
chemotherapy (CRS/HIPEC). In many cases, symptoms are misunderstood for
years, and patients are thus less likely to benefit from CRS/HIPEC. This
treatment, unavailable to our patient population only a generation ago, has
turned what used to be an almost certain death sentence into hope for
thousands of patients around the world.
We share the goal that every patient who presents with the common symptoms
of these diseases – abdominal pain, increased abdominal girth, bloating, hernia,
ovarian cysts or tumors, and ascites – receive correct diagnosis through tumor
marker blood tests (CEA, CA 19/9, CA‐125) and CT scans and be afforded the
option to be treated with the Standard of Care, CRS/HIPEC, by a qualified
surgical oncologist before any other counterproductive and potentially
damaging treatments are attempted.
We all share the hope of achieving this goal, and by joining together in this
statement and sharing this information, we strive for future patients suffering
from these diseases to receive the better care that they deserve.