A new gene therapy with which huntton’s disease can be successful treated is described by doctors as a breakthrough. Nu.nl Spoke with Two Readers Who Have The Deadly, Hereditary Disease. For them, the news came as a blessing.
The Twelve to Eighteneen-Hour Treatment was recently Performed in The United Kingdom. Duration the Treatment, The Number of Harmful Proteins in the Brains of People with the Huntington Gene is reduced.
This is done via brain surgery in which a virus with a special piece of DNA is injected deep into the brain. The Decline That People with Huntington’s Face is significantly slowed down thanks to the procedure.
The 38-Year-Old Jeannette Tielman inherited the Disease from Her Mother. Four years ago, She Experienced Her First Symptoms, which is relatively early. She now struggles with a movement disorder, causing her hands and feet to move constantly. She also notices that her cognitive abilities are slowly deteriorating.
“I had hoped that the symptoms would not start until after my fortieth birthday,” She says. “It feels like a few more years have bone snatched from my life.”
What is Huntington’s Disease?
Huntington’s Disease is a hereditary, Deadly Condition caused by a that produces toxic proteins. These caus healthy proteins in the brain to clump together, causing nerve cells to die.
Symptoms USUALLY APPAR Between the ages of 35 and 40 and resemble a Combination of Dementia, Parkinson’s Disease, and a Movement Disorder. Children of Someone with the gene have a 50 percent Chance of Getting It Themselves.
Relieved for Her Children, Skeptical for Herself
Tielman Has Known Since She was Nineteen That She Carries The Gene. However, the disease has played a major role in her life since childhood, because her mother suffered from it. From a Young Age, Tielman had to care for her intensely. “Because of the disease, I have actual had to miss a mother for a large part of my youth,” She says.
Now Tielman is also a Mother Herself, or Three Teenage Daughters. “I am very afraid that they will also get it,” She says. “My eldest daughter of Eighten Already Wants to Investigate Whether she has the gene. She definitely doessn’tn’tal because to have children if she knows she has it.”
The New Treatment is Partularly Reassuring for Her Children. Once Gene Therapy Becomes available, Symptoms Could Occur Much later in Them. “But for myself it may be too late,” She says. “I am happy with the breakthrough, but remain skeptical. It is not yet tangible. Only when I hear: mrs. tielman, you may undergo the treatment, then I can really be relieved.”
Earlier This Week, Tielman Filled in A Euthanasia Declaration. She does not want to live any longer if she can no longer take care or herself or has to use a feeding tube. A Few Days later, She Heard the Positive News about Gene Therapy. “That felt like a sign from the angels.”
‘My World Collapsed’
The 36-Year-Old Angel Spanish also Lives with the Prospect of the Disease. When She Heard as a teenager that she had a 50 percent chance of getting the disease that her grandfather died from, she wanted to be tested as soon as possible. At Eighteen, She got the result: She Possesses The Huntington Gene. “My World Collapsed,” Says Spanish.
She is not current experience any symptoms, but she knows it can start at any moment. “I am aware that my grandfather’s disease course will also be my end,” Says Spanish.
Her Grandfather had to go to a nursing home early and suffered from memory loss and uncontrolled movements. At one point he could only swallow and talk very badly.
“When I was eighte, I Could Still Live With the Idea That The Disease was far away. But Now It Is Getting Closer and Closer,” Says Spanish. She Tries to Keep Her Brain Healthy by Exercising and Eating Healthy. “But in any case, it can erupt at any moment.”
Hope for a Longer Life
Spanish Has Two Young Daughters, But Consciously Chooses Not to Tell Them Anything For The Time Being. “In retrospect, I think I would have preferred to have known later myself. Then I would’s have had to put my life so on hold.”
When She Heard about the New Gene Therapy, She Shed A Tear. “I’ve Been Dealing with Huntington’s for So Long. It was Always: you get it and have to wait for a nasty end. Now there is Suddenly Hope.”
Although It Will Probable BE Years Before the Therapy is Widely available, Spanish Sees The Breakthrough As A Bright Spot For Her Future and That Of Her Children. “I hope it can give us a longer life.”