Medical Condition: Severe Spasticity From Cerebral Palsy
Medical Therapy: Intrathecal Drug Pump*
Charity: Convives con Espasticidad
Diagnosed with cerebral palsy when she was two, Claudia considers herself lucky for the opportunities she received growing up, and for the pump that gives her more independence from her body's limitations. She created Convives con Espasticidad to connect and support other young people with spasticity.
"I have cerebral palsy. I was born after 22 weeks of gestation. Survival before 29 weeks is almost nonexistent, and doctors told my parents that I was likely going to be a 'vegetable.'
"However, my parents did not give up on me. They kept searching for treatments that would help me. When the rest of the treatments began to fail, my doctors recommended the drug pump for me, which treats my spasticity and gives me an independent life. Spasticity causes stiffness and tightness in my muscles, limiting my movements.
"But with the pump, I can dress and shower on my own, which had been impossible. I can move more freely since my spasticity has been dramatically reduced, and that allows me to go out and dance or party with my friends as any other girl.
"I am very lucky that my parents had the right information at the right time about the drug pump. And for the doctors who helped me get the therapy. If they had not been aware of the therapy, and information wasn't easy to find, it would have never been implanted. That it is why I have decided to 'spread the word' about pump therapy, in order to help other patients. The drug pump changed my life.
"However, not all patients in my country are as lucky as I was. Many of them don't have the right information about the therapies that could help them to live a better life. This circumstance reduces the likelihood of the receiving the most appropriate treatment for their condition.
"Information is power and that is why I decided to create Convives con Espasticidad, an organization with a mission to spread the word about all the therapeutic options that could benefit people living with spasticity. At Convives con Espasticidad we also provide information that may be helpful to improve a person’s social and work environments. This is the way I try to help others."
"The word 'disability' includes the word 'ability.' We all have abilities and disabilities and we can help each other make the most of our abilities. Only by being proactive can we succeed in making a better world for everybody.
"Good information can change your life. Don't forget that everybody is a potential disabled person and should have in mind that giving up is not an option. The self-barriers might be surmounted to face the real-life problems that are nearly the same for all of us."
Convives con Espasticidad, which in English means 'Living with Spasticity,' is a nonprofit organization whose main objective is to support and promote personal autonomy and inclusion in all areas for people living with spasticity, through the use of new technologies. We primarily do this through our Internet project, which provides a virtual platform that aims to reunite all health, social and labor information that may be useful to all who are affected by spasticity."
*Not everyone who receives this therapy will receive the same results as the patient in this story. Talk with your doctor to determine if this type of therapy is right for you.