- Date: August 22, 2018
- By: Jean Martell
The Alagille Syndrome Alliance has launched its first ever multi colored awareness ribbon in support of the Alagille syndrome (ALGS) community!
The multi-colored awareness ribbon is meant to represent the complex and uniquely varying severity of the disease throughout the ALGS community.
WHAT IS ALGS?
Alagille syndrome is a rare genetic disorder that affects multiple organ systems in the body, including the liver, heart, skeleton, eyes, and kidneys. However, the specific symptoms associated with these organ systems vary greatly from person to person, even within the same family.
So because ALGS affects so many different organs, the ribbon was conceived as a way to represent the different ways this rare disease affects people.
According to the Alagille Syndrome Alliance:
It is our hope that we can unite, relate and empower everyone dealing with ALGS, either mild or severe, and bring together those with significant organ representation who may not focus on ALGS as a whole but rather the organ system most affected.
This non-profit org strives to support the ALGS community through innovative efforts that emphasize education, opportunities to connect, access to resources, and individual support.
They provide resources, organize symposiums, collaborate with medical professionals, and more!
In an effort to fully capture the complexity of ALGS, they created an alagille syndrome multi colored ribbon, which represents the following:
YELLOW – for the liver and digestive system
RED – for the heart and circulatory system
GREEN – for the kidneys and renal system
BLUE – for the lungs and pulmonary system
PURPLE – for the brain and vascular system
CREAM/PEARL – for the skeletal system
Each stands alone as a representation of symptoms and effects each individual diagnosed faces – and together it represents the unity of a community who is mobilizing and fighting for awareness and treatment.
So please share this with anyone who might need it! And check out the organization on Facebook!
Copied from Patient Worthy. You can see the original article HERE.