Natalia Titova

NATALIA TITOVA, 25

2016 BAKKEN INVITATION HONOREE
KIEV, UKRAINE

Medical Condition: Neurological condition
Medical Therapy: Neurostimulation for movement disorders
Charity: The Association of Patients with Torsion Dystonia

At age four-and-a-half, Natalia began to fall for no reason and experience hand tremors. She went to many doctors, all offering different diagnoses. Natalia walked less and less, tired quickly, had speech problems, and couldn’t feed herself. Finally, at age 19, she was properly diagnosed with torsion dystonia, a neurological movement disorder. After undergoing deep brain stimulation (DBS)* surgery, Natalia can now walk and help her mother around the house. She also advocates for people with torsion dystonia. Natalia’s Bakken Invitation Award will support a range of rehabilitation programs for patients after they undergo DBS surgery.

*Humanitarian Device - Authorized by Federal Law as an aid in the management of chronic, intractable (drug refractory) primary dystonia, including generalized and/or segmental dystonia, hemidystonia, and cervical dystonia (torticollis), in patients seven years of age or above. The effectiveness of the devices for treating these conditions has not been demonstrated.

NATALIA'S STORY

“At age four-and-a-half, I began to fall for no reason and experience tremors in my hands. Many doctors offered diagnoses and prescribed medications, but I only felt worse. I could not walk for any period of time, and I started to experience speech problems. As my symptoms progressed, my mother had to feed me and every night my body was twisted by painful convulsions. Finally, I realized I could have a full life. I entered the university, have friends, and, most important, am no longer a burden for my mother.

“My mom and I continued to seek the right diagnosis and treatment. In 2010, at age 19, we finally found the right specialist who diagnosed me with torsion dystonia, a neurological movement disorder, and suggested deep brain stimulation (DBS)* surgery. I wanted the surgery very much, but my family could not afford it and the Ukrainian government would not pay for any of it.

“We sought help from charity foundations and through social media networks. In 2012, I became the first Ukrainian patient to receive DBS surgery. I cried with joy the first time, when at age 21, I could walk and not use a wheelchair. Finally, I realized I could have a full life. I entered the university, have friends, and, most important, am no longer a burden for my mother.

“I want to inspire people with dystonia and tell them, ‘Even if you think you will spend your life in a wheelchair, you should never give up. There are people and technologies that can help you live a better life.’ I am using my extra life to fight for the rights of dystonia patients through the public organization I created, the Association of Patients with Torsion Dystonia. We work with doctors and the Ukrainian Ministry of Health to help people with dystonia receive a proper diagnosis and get reimbursed for treatment.”

*Humanitarian Device - Authorized by Federal Law as an aid in the management of chronic, intractable (drug refractory) primary dystonia, including generalized and/or segmental dystonia, hemidystonia, and cervical dystonia (torticollis), in patients seven years of age or above. The effectiveness of the devices for treating these conditions has not been demonstrated.

NATALIA'S WORDS OF INSPIRATION

"I want to inspire people with dystonia and tell them, ‘Even if you think you will spend your life in a wheelchair, you should never give up. There are people and technologies that can help you live a better life.’"

$20,000 GRANT MAKES AN IMPACT

The Association of Patients with Torsion Dystonia is a nonprofit organization founded by Natalia Titova, who suffers from the disease. The organization works with doctors and the Ukrainian Ministry of Health to draw their attention to the challenges of people with dystonia, and to help patients receive proper diagnosis and treatment. The grant will support a range of rehabilitation programs for patients after they undergo DBS surgery*.

*Humanitarian Device - Authorized by Federal Law as an aid in the management of chronic, intractable (drug refractory) primary dystonia, including generalized and/or segmental dystonia, hemidystonia, and cervical dystonia (torticollis), in patients seven years of age or above. The effectiveness of the devices for treating these conditions has not been demonstrated.


*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.