Rare Disease Report

What is Your Definition of Strong?

APRIL 08, 2016
James Radke
A photo of a t-shirt has gone viral and in the process, has raised awareness of the daily struggles that depict many in the rare disease community endure every day. And they endure those struggles with determination and a smile–the true measure of strength.
The photo depicts the friendship between 29-year old professional powerlifter David “The Beast” Douglas, and 12-year-old Progeria patient, Lindsay Ratcliffe.
The t-shirt in the photo shows that while the powerlifter may be one of the strongest men in the world, the 12 year with the rare disease who gets up every day to embrace the day is the stronger of the 2 people. 
And as many in the rare disease community know, the t-shirt is true.

What is Progeria

Progeria is caused by a mutation in the LMNA gene that eventually leads to abnormal levels of the protein progerin that disrupt the nucleus of cells and causing children with this condition to age prematurely.

Children with Progeria begin to display many characteristics of accelerated aging at around 18-24 months of age.

Progeria signs and symptoms include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular disease and stroke.
Most children with progeria die of atherosclerosis in their teens.

Currently there is no approved treatment for Progeria. However, since 2007, The Progeria Research Foundation has spearheaded several clinical trials, including the most recent 'triple trial' involving Lonafarnib, Zoledronic acid, and Pravastatin. Next month, The Progeria Research Foundation will host the 8th International Scientific Workshop in Cambridge, MA. To those interested in attending, visit http://progeriaresearch.org/prfs-2016-scientific-workshop/

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