Hi, my name is Candace Lerman.
On May 1st, 2014 my life changed forever. I was hospitalized and diagnosed with a rare blood disorder called Immune Thrombocytopenia or ITP for short. I was stripped of my successful career and my independence in the blink of an eye. Now I am at war to find my “new normal”. This event gave birth to my new identity: a rare disease warrior.
There is a certain power in becoming an E-Patient and communicating with people involved in healthcare from all over the world. The spread of information and experiences helps to raise awareness of the issues surrounding the rare disease community. I hope that by sharing my battles, I can inspire others to share their journey. I am actively involved with various advocacy efforts, mainly focusing on the development of legislation for the over 30 million Americans who suffer from a rare disease. It is imperative that patients interact with doctors, scientists and pharmaceutical companies to work towards a common goal of treatment options and ultimately cures for our disorders.
ITP took a lot of things away from me, but it cannot destroy my spirit. I am rebuilding my life in a radically new way thanks to success with “off-label” use of Rituxan. The drug has allowed me the opportunity to pursue a law degree, lobby Congress and become an outspoken supporter of the 21st Century Cures Initiative. I am living proof that repurposing drugs deemed safe by the FDA can drastically change healthcare.
I am the Florida Director of the Rare Disease United Foundation and a second year law student. I also write articles on issues involving drug development and rare disease issues.
If you need to reach out, you can e-mail me at RareCandace@gmail.com and follow me on Twitter & Instagram @RareCandace.