T-shirt contest
¡Bienvenidos a la segunda SEMANA GLOBAL DE CONCIENTIZACIÓN SOBRE SDS! Esta página le brinda acceso a todas las grandes iniciativas de la comunidad SDS: grupos de defensa de pacientes SDS y familias de superhéroes SDS de todo el mundo.
La comunidad eligió una fecha para que coincidiera con el 25 de abril, que era el cumpleaños del Dr. Harry Shwachman. Dres. Shwachman y Diamond jugaron un papel decisivo en la definición del síndrome de Shwachman-Diamond con su histórica publicación en la revista Pediatrics en 1964, titulada "El síndrome de insuficiencia pancreática y disfunción de la médula ósea".
Esperamos que más y más organizaciones y familias participen con el tiempo para que esta campaña pueda crecer y llegar a más familias y proveedores médicos.
La sensibilización puede salvar vidas. Cualquier diagnóstico realizado antes disminuye la carga y el sufrimiento de la odisea del diagnóstico, y las intervenciones para salvar vidas pueden comenzar antes. La comunidad SDS puede crecer para apoyar investigaciones más específicas, acelerando el paso hacia terapias y curas.
Si tiene preguntas sobre algún evento o campaña en particular, comuníquese directamente con la organización anfitriona o la familia. Las donaciones a cualquiera de las organizaciones de SDS son siempre bienvenidas y apreciadas. Visite sus respectivos sitios web para más detalles.
Si es un paciente de SDS o una familia que busca organizaciones locales de apoyo, consulte la lista en el sitio web de SDS Alliance, aquí . Puede encontrar información general sobre SDS para pacientes y familias aquí .
Lorin (33)
Artist statement:
"This piece is called be a unicorn. In the medical world, there is a saying 'if you hear hoof beats it's probably a horse. The horse represents common disease and sickness. If a doctor calls you a zebra it's not a very common disease. If you hear a unicorn it's extremely rare. We are not horses or zebras. We are unicorns and we should be proud to be rare."
Teresa
Title: For the Love of Blood
Artist statement: This design is the shape of a heart that is made up of 2 S's. The S that is facing the right way holds the thought/dream of a cure and the other S is backwards and holds the D for diamond inside. Both sides are filled with blood but the D for diamond is not so clear. The diamond, which is considered the jewel of them all, is the treasure that we are seeking and (re)searching for. Heart shaped droplets of blood drip from the narrow gap at the base of the 2 S's onto the whole name of the condition. Blood issues are the main issues that affect those who have SDS. Blood is the drop of life and identity (genes/DNA/blood type), and is part of our identity. The health of the blood affects the whole body and all the different systems. We all want to live the best life we can and so we need our blood to work, we would love for our blood to work properly and in turn circulate around the body so that we are healthy. Instead for some of us the blood seems to gradually drip away (metaphorically as the health of the blood declines (and also from lots of blood tests!)) and needs to be replaced by blood infusions or even bone marrow transplants. The challenges of living with SDS vary from person to person but together we are all united by the desire, the dream, for a cure for each of us so that we are each able to be the healthiest we can and in turn live a long life that we love.
PenguinsDraw (8)
Artist statement:
"I was thinking of the earth for the word global. The arrows are supposed to show the earth spinning. I like to draw and color."
HannahBanana (11)
Artist statement:
"This is my attempt at digital graphic design. It shows the earth for "global", with people supporting each other and working together to make things better for people with SDS, like my little sister."
HannahBanana (11)
Artist statement:
"Awareness day is for raising awareness and starting conversations! This design is meant to invite others to ask questions about SDS."
HannahBanana (11)
Artist statement:
"This design is to invite others to join and raise awareness together. I drew this first for the kids calendar, and we reused it for this T-shirt design. Ribo is holding a megaphone."
Eszter
"I adopted this design which HannahBanana drew years ago for the kids' calendar. I feel that this graphic of Ribo and Somi drawing the #CureSDS diamond shield is a great way to show the strength and focus it takes to work toward what we want for people with SDS, like my daughter. Turning hope into action."
¡Muchas gracias a todas las familias de SDS de todo el mundo por compartir sus historias!
Las historias están disponibles en los canales de redes sociales de SDS Alliance: