Tuesday, 18 Dec 2018

"Everything is for Alexis": she has not yet 2. Her father is afraid of having Alzheimer's disease.

Andres Martin, a 31-year-old sailor, is being treated at the Walter Reed National Military Medical Center for a rare form of Alzheimer's disease affecting people with roots in Jalisco, Mexico. He fears that his daughter, Alexis, who is not yet 2 years old, has it too. (Sarah L. Voisin / The Washington Post) Theresa Vargas local columnist who had previously written for the local business team about poverty, race and people with disabilities. Andres Martin was on the couch of his Maryland home, surrounded by his family, when he started talking about how people perceive Alzheimer's disease. They think of the 70s and 80s, he said. They think about people who have already lived a busy life. People who have already had children and maybe grandchildren. "That's not what it is," Martin said. "That," he said pointing to his infant daughter who, a few moments before, had made kisses, "is Alzheimer's here." Not yet 2 years old, she looked at him and smiled, unaware that He was talking about his deepest fear. for her. "Weeeee" She said, as if she were on a ride. Martin's daughter, Alexis, has not yet been tested to find out if she has a gene that makes her likely to have progressive brain disease. But the 31-year-old father has reason to fear the worst: he has it. His father had him. And his daughter has a 50% chance of developing it. "I make my personal fight, my personal mission, a cure for Alexis," said Martin. "Before leaving this world, Alexis will be in a good place." "Everything," he says, "is for Alexis."
Alexis, who is not yet 2 years old, has a 50% chance of carrying a gene that has been linked to Alzheimer's disease at an early stage. (Sarah L. Voisin / The Washington Post) More knowledge usually means fewer unknowns. This is not true for the Martin family. For them, the answers brought more questions. Last year, Martin was a pilot for the Hawaii-based Marine Corps. Then his sister sent him an article and suddenly his life changed. He stopped flying helicopters. He eventually moved to Maryland to get close to the Walter Reed National Military Medical Center. And he undertook a new mission: to raise awareness about Alzheimer's disease.[[[[
This teenager may one day be a sailor. But first he must dance in the footsteps of a fallen man.]The article was about the "Jalisco mutation," a genetic mutation that affects people with roots in this region of Mexico and has been linked to early Alzheimer's disease. When Martin read it, he finally figured out why his father, then in his forties, was starting to forget things to the point where he had to quit his job as a welder and could no longer borrow familiar routes without getting stuck. ; confuse. He finally understood why his father had died at the age of 51. Shortly after reading the article, Martin decided to get tested for the gene. In September 2017, he and his wife, Amanda, met with a doctor to see the results. She remained optimistic. He's prepared for the worst. The test confirmed their fears and asked them about their daughter, who will only be tested at 18 years old. "It was the lowest for us," Amanda Martin said. "Knowing that my husband and daughter are really sick is difficult. In ten years or five years, how is our life going to change? Will he be completely sick? This is possible. In twenty years, will not it be there and we will discover that it has it? This also raised questions for Martin's two sisters, who could also carry the gene. His sister, Elizabeth Martin, is a 24-year-old police officer in California. She is not married and does not have children, but if she has the mutation, she says that she will have to determine if her future will include a family. "I'm not afraid it's a yes," she said of her test results. "I'm afraid of the decisions that I will have to take afterwards."
Andres Martin, a 31-year-old sailor, sits in his Maryland home with his wife Amanda, aged 30, left, daughter Alexis, and sister Elizabeth Martin, 24 years old. (Sarah L. Voisin / The Washington Post) The Martin family wanted to share their story because they thought their best chance of fighting the disease – and ideally finding a cure before Alexis became an adult – was concretize by an awareness. They believe that for science to succeed, more people, especially Latinos, need to start participating in clinical trials. Martin has created a Facebook group allowing people to discuss Alzheimer's disease and the Jalisco gene at early onset. Earlier this year, he also helped organize a conference bringing together American Alzheimer's experts in Mexico to discuss the disease. This is the first time that some people are aware of the death of their loved ones, he said. "It's such a disparity of health outsourced among Latinos," said Jason Resendez, executive director of
Latinos against Alzheimer's. "We have certainly made significant efforts to fight heart disease and diabetes. Alzheimer's is just not in the same conversation. "
Andres Martin and his mother, Maria Guadalupe Martin. (Sarah L. Voisin / The Washington Post) In the United States, Latin Americans are 50% more likely to develop Alzheimer's disease than non-Latino whites, yet they remain underrepresented in clinical trials , did he declare. "Mexican Americans have symptoms seven years earlier than other ethnic groups," said Resendez. "Why, we still do not have good answers to these questions because of the lack of attention to understanding Alzheimer's risks among different ethnic groups." Martin participated in a clinical trial. a clinical study at the University of Southern California, where John Ringman is an Alzheimer's researcher and a Jalisco mutation expert, Ringman said his team had identified about 70 different families with the mutation. the youngest to have symptoms was 33 years old and the oldest at 54. According to him, it is more common that the symptoms appear when people are 40. Based on the experience of his father Martin thinks he is still 10 years old before his family notices the change, so in order to extend that time and keep his brain healthy longer, he started Transcranial magnetic stimulation treatment at Walter Reed, where he learned French and played games via applications to stimulate mental activity. He also tries not to think about what he can not control. His wife said that she asked him how he felt for the future and whether he was afraid of death, but he told him he was not worried about it. "I already have something to try to kill myself," he explained. "Why help it? If I am depressed, I help him. If I do not sleep, I help him. He would prefer, he says, to focus on what he can do. What he can do is let people know that a little red-haired girl who loves ballerinas and who can count to three in English and Spanish may one day, with no remedy or way to slow down the progression of the disease, get lost. Alzheimer. What he can do is take her in his arms, hug her as she laughs and feels grateful that he's still healthy enough to enjoy this moment.

Andres Martin lost his father because of a rare form of early Alzheimer's disease. He hopes that a cure will be found before his daughter, Alexis, grows up. (Sarah L. Voisin / The Washington Post).

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