Carrying on a Legacy...
ELYSESTRONG "A place inside we can find strength"
ELYSESTRONG is a legacy left to us
by our young 13 year old daughter!
She is our reason to fight! We are
waging a war against Castlemans
disease because it took the life of
someone who was meant to change
lives... Now we fight to change lives
in her honor!
My name is Kim Driscoll I serve as a member on the board of directors for CDCN ( Castleman Disease Collaborative Network ) I have founded the ELYSESTRONG memorial motorcycle ride. This ride started in 2015 as our first annual ride for awareness and fundraising efforts to fight against Castleman Disease.
What is Castleman Disease?
Castleman Disease (CD) is recognized as an orphan disease in that it is not well understood. CD describes a group of rare and poorly-understood hyper inflammatory disorders that occur in people of all ages, causing lymph node enlargement , multi organ disfunction as well as organ failure. There are different subtypes of CD, UCD is the unicentric type (one node or one region of nodes involved)
MCD multi centric type (multiple nodes in multiple areas of the body) CD patients have symptoms very similar to patients with lymphoma. CD is as common as ALS, and is as deadly as cancer (average for all cancers combined).
Elyse is my 13 year old daughter. Elyse was diagnosed in May of 2013 with UCD. We were under the impression that surgery would be curative, after 9 long months battling for her life and having so many complications of CD Elyse succumbed to her disease. Elyse gave the fight against Castlman Disease all that she had. Elyse was also fighting a rare complication of her disease known as Paraneoplatic Pemphigus which is a blistering condition related to the inflammatory process that her body was up against. In the last 9 months of my daughters life we were unable to communicate because she had to be so heavily sedated to control her pain. But I know that she didn't want to give up and I stood as strong as I could by her bedside. Until our last words were “I’ll love you forever” and now my forever is without her. Castleman Disease took away from me, away from the world.