Escaping from Deadly Porphyria to Running the Chicago Marathon, Nicole Castellano Inspires All!

Saint Charles, IL On October 8 at the 40th Anniversary Chicago Marathon, Nicole Castellano will run to bring attention to a rare disease, Porphyria. Nicole is herself a survivor of this rare illness, with near fatal experiences that beat her down physically and mentally. At the marathon, every step she takes will help support others ailing with Porphyria and all donations received will go towards the American Porphyria Foundation (APF). Since Porphyria is rare, funding from the government is minimal, therefore donations are critical to increase awareness and research for a cure.

Nicole has seen it all and emerged triumphant. From a world class skating athlete, she was reduced to a shadow of her former self due to Acute Intermittent Porphyria, one of at least eight types of this rare disease. She became wheelchair bound unable to walk suffering burning, stabbing pain in her abdomen that was unbearable. She underwent nine abdominal surgeries, including a hysterectomy that wasn’t required, that left her unable to have children.  She experienced mental changes including hallucinations from a lack of oxygen in the brain that is common with Porphyria and almost died three times.

She says the worst part was not knowing WHY and living like that for 12 years before she was diagnosed and finally treated with the expensive drug Panhematin that she says saved her life. Nicole still gets monthly infusions through a port in her chest to keep Porphyria at bay.

An active role was played in Nicole’s recovery by the American Porphyria Foundation, which is dedicated to improving the health and well-being of individuals and families affected by Porphyria. The APF was instrumental in doing research and getting the drug approved that Nicole and so many Porphyria patients rely on.

Before Porphyria attacked her body, Nicole attended Northwestern University 1991-95, graduating with honors with a double major in theatre and anthropology. Like any other teenager she dreamed about her future, and passionately took up photography and writing during a trip to Africa and even got her pilot’s license.  She went on to start a moving and storage firm, and was awarded the 2005 Businesswoman of the Year by the Business Advisory Council. Her dreams were however soon to come crashing down with the advent of Porphyria.

A rare and difficult to diagnose disease, Porphyria inflicts chaos on the autonomic nervous system. Some symptoms are neurological problems, severe stomach and back pain, vomiting, nausea and sun sensitivity. Extreme pain and possible fatalities make Porphyria a dreaded illness which currently has no cure and is so rare it has Orphan Disease status.

Nicole hopes that since testing is available for Porphyria, the funds raised for the APF will go toward their Physician Education Programs so that doctors can diagnose more patients and more quickly so they don’t have to live with the horrible uncertainty that tainted her recovery.

“I began doubting everything I knew about myself and It affected my relationships, my self worth and self-esteem. I stopped believing in myself, feeling like at times the doctors thought it was all in my head.  I knew it wasn’t, but I blamed myself for being sick, for not being able to function like I used to thinking that I should have been able to be stronger somehow. I now help other women see it’s not their fault they’re sick, they’re not alone and it’s not who they are, it’s just something happening to them right now,” she says.

Nicole fought on bravely, started a painting business and an Arbonne Health and Wellness business, saying that her treatment got to her about 70% of her health back, but following Arbonne’s specialized diet got her all the way to 100%. After attending an Arbonne leadership conference, she started dreaming again and clawing her way out of survival mode.

Just as the 40th Anniversary Marathon is a milestone for Chicago, this run marks a milestone for Nicole and her battle with not only Porphyria, but the stigma attached to it.

Nicole says, “When you’re fighting a rare disease it’s easier to have people that love you unconditionally help you through. Even if you don’t have that, you can still bounce back stronger than ever and reclaim your happiness! It starts with taking control of your health and your life. I show women struggling with serious illness and relationships how to heal and get their life back, even when they think there’s no hope.”

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City: Saint Charles
State: IL 60174
Country: United States