Friday , January 22 2021

Fathers, infected with a rare form of Alzheimer's disease, are afraid for their daughter – a lawyer of the "Red Daughter"



Andres Martin was on the couch at his home in Maryland, surrounded by his family, when he began talking about how people look at Alzheimer's disease.

They think of 70-year-olds and 80-year-olds, he said. They think of people who have already lived a full life. People who already had children and maybe grandchildren.

"That's not the case," Martin said.

"That's right here," he said, pointing to his daughter, who had been kissing a few minutes ago.

No more than 2 years, she looked at him and smiled, not knowing she was talking about her deepest fear of her.

– Way! she said as if she were getting up.

Martin's daughter, Alexis, has not yet been tested to see if she has a gene that makes it likely that there will be a progressive brain disease. But the 31-year-old father has a reason to worry about the worst: he has it. His father had it. And his daughter has a 50 percent chance of developing it.

"I made a personal fight, my personal mission to find medicine for Alexis," Martin said. "Before I leave this world, Alexis will be in a good place.

"It's all about Alexis," he said.

Most knowledge usually means less well-known. This is not true for the Martin family. The answers to them gave more questions.

Last year, Martin was a Marine Corps pilot in Hawaii. Then his sister sent him an article and suddenly his life changed. He stopped flying with helicopters. He eventually moved to Maryland to be closer to the Walter Reed National Military Medical Center. And he took on a new mission: to lead to awareness of Alzheimer's disease.

The article is about the "Jalisco mutation," a genetic mutation that affects people with roots in this region of Mexico, and is linked to Alzheimer's disease in early childhood. When Martin read it, he finally understood why his father, when he was 40 years old, started to forget things to the point that he had to leave his job as a welder and could no longer drive familiar routes without being confused. He finally understood why his father died at age 51.

Shortly after reading the article, Martin decided to test for the gene. In September 2017, he and his wife, Amanda, met with a doctor to hear the results.

She remained optimistic. He prepared himself for the worst.

The test confirmed their fears and left them to wonder about their daughter who would not be tested until she was 18 years old.

"It was the lowest for us," said Amanda Martin. "Just knowing my husband and daughter might get sick is hard. Ten years after that or five years from now, how will our lives change? Will he be totally ill? It is possible. Twenty years from now on it will be that he is not here, and we find that he had it?

It also raises questions about Martin's two sisters, who can also carry the gene. His sister Elizabeth Martin is a 24-year-old policeman in California. She is not married and has no children, but if she has a mutation she said she would have to consider whether her future would include a family.

"I'm not afraid that's yes," she said about the results of her tests. "I'm scared of the decisions I have to make after that.

Martin's family wants to share his story because he believes that their best chances of fighting the disease – and ideally finding a cure before Alexis is an adult – will be realized. They believe that more people – and especially Latino-Americans – must be involved in clinical studies to get to science.

Martin has created a Facebook group in which people discuss the early stages of Alzheimer's disease and Jalisco. Earlier this year, he also helped organize a conference that brought experts from Algiers to Mexico to discuss the disease.

This was the first time some people realized that they and their relatives were dying, he said.

"Such insufficient health inconsistencies among Latin Americans is so insufficient," said Jason Resend, executive director of the Latin American Alzheimer's disease agency. "We definitely made a lot of effort to deal with heart disease and diabetes, and Alzheimer's just not in the same conversation.

Latin Americans in the United States are 50% more likely to develop Alzheimer's than non-latino-white, yet they remain poorly represented in clinical trials, he said.

"Mexican Americans show symptoms seven years earlier than other ethnic groups," Rexend said. "Why not? We still do not have great answers to these questions because of the lack of focus on understanding Alzheimer's risk among different ethnicities."

Martin was involved in a clinical trial. He was also part of a clinical study at the University of Southern California, where John Ringman is an Alzheimer's researcher and Jalisco mutation expert.

Prudman said his team has identified about 70 different families so far that have the mutation. Among them, the youngest who have had symptoms are 33 and the oldest is 54. The more common, he says, are the symptoms to appear when people are 40 years old.

Based on his father's experience, Martin thinks he has another 10 years before his family notices changes.

In an effort to extend the term and keep his healthy brain longer, he began regular transcranial magnetic stimulation therapy at Walter Reed, studying French, and playing games through applications that helped stimulate mental activity.

He also tries not to think about what he can not control. His wife said she had asked him how he felt about the future and whether he was afraid of death, but he told her he was not worried about it.

"I already have something trying to kill me," he explained. "Why should I help him? If I'm depressed, I help him, if I do not sleep, I help him."

He prefers, he said, to focus on what he can do.

What she can do is tell people that a little red-haired girl who likes to make a ballerina can count three in English and Spanish one day without treatment or a way to slow the progression of the disease . Alzheimer's.

What she can do is pick it up, press her, and feel grateful that she is still strong enough to enjoy that moment.


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