As a young man he was diagnosed with Parkinson's and now he is looking for more patients to have access to clinical trials in Latin America

Lucia Wang was studying a subject for her doctorate and began to notice that she had trouble taking notes during classes quickly. He spent it abbreviating and generating symbols so as not to lose the main ideas that were being said during classes. Afterwards, there was a discomfort when she had to brush her teeth or beat eggs. In front of the computer, he had to switch to the mouse places because he noticed that he manipulated it better with his left hand. This was Wang's first moments with symptoms of early-onset Parkinson's disease. She was diagnosed at the age of 33.

“Parkinson's also exists in young people and we can help find the causes,” Wang said when interviewed by Infobae. This is a rare disorder, which usually has a slower progression to the disease that develops in people over 60 years of age. “One side of the body starts to work differently. The movements are slower and the body is more rigid: it impacts the expression of the face, on the agility, the way we walk, the writing and even the tone of the voice,” he said. She is 46 years old; she is a sociologist, communicator and mother of one son.

Wang has been living with the disorder for more than 12 years and has managed to go through the change, help other people with guidance. It now puts all its energy into getting more patients to participate in clinical trials to understand the causes of Parkinson's disease, that there are more studies on the social aspects of patients and that they are taken more into account in national statistics within the health system.

“When I was diagnosed with early-onset Parkinson's, I had different emotions. On the one hand, I was relieved because it had been suspected that I might have a tumor but it was ruled out. On the other hand, I felt sad because my brain was failing, and it wasn't just for a few days. I had to start learning to live with the disease,” Wang told Infobae. “I have good days and bad days, fears, jobs. I give myself the opportunity to choose with less guilt what I want and what I don't want, I give myself more permission to live a good life. With Parkinson's, I'm slower through life, but I'm also lighter. I am more connected to the present,” she said. Today is World Parkinson's Disease Day.

While making his personal transformation, Wang launched his leadership skills. She is the co-founder of the organization Parkinson Argentina, which is part of the Argentine Patient Alliance (ALAPA) ). He dreams of seeing the results of proposals that will change the look and attention of patients with Parkinson's.

“We are trying to organize a national registry of people with Parkinson's. It is estimated that there are more than 90,000 people with Parkinson's in Argentina. But we don't really know how many we are, and to push public policy related to the disorder, we need data,” he said. “We also need to say that Parkinson's has been stereotyped: it is related only to older people. But there are people like me and many younger people who start with early-onset disorder. Young Parkinson's was hardly considered before,” he added.

For Wang, “there is a lot of information needed for the population to know the diagnosis earlier and to be able to access treatment and for there to be more clinical and social research on early-onset Parkinson's. Very little is still known about the causes of the disease despite being a disorder that was described more than 200 years ago by James Parkinson, and even less is known even when the disorder develops early after age 21,” he said.

One of the drawbacks is that not all patients agree to participate in clinical trials that take place. Information should be better circulated and that patients whose primary physicians are not researchers in these trials be accepted, he said.

During the last few weeks, Wang has attended different meetings so that Argentina can also join a genetic research study that is already being carried out in 25 Latin American countries. They have financial support from the Actor Michael Fox Foundation and the National Institutes of Health of the United States.

“It's called Large PD and it's a study that seeks to know the genetics of Parkinson's disease in Latin American countries. So far there is work in that direction on the population of the United States and Europe,” he said. The study may participate over 18 years of age who have Parkinson's disease or not.

Each person who participates in the study will help scientific research to discover genetic factors linked to the causes of the onset of the disease. It can be consulted by email: parkinsonarg@gmail.com, although the recruitment has not yet been opened. Participation in the study will only consist of a blood draw. You don't have to take any particular drugs.

The Large PD study will be implemented in the country by the Research and Technological Linkage Unit (UniViTec) of the Argentine Patient Alliance, which is part of Dr. Clarisa Marchetti, in collaboration with the Ministry of Health of the Province of Buenos Aires and the General José Interzonal Hospital in San Martín de La Plata. This study is coordinated by Dr. Ignacio Mata from the Lerner Genomic Medicine Research Institute of the Cleveland Clinic in the United States and began in 2005.

“This trial will be a great opportunity for people with Parkinson's to participate and get involved. Scientific research is not only done by scientists,” said Wang. Patients can also contribute to the knowledge of a disease and to the development of treatments.”

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