We’re going to have a drug that actually has a meaningful impact of the disease progression, actually slowing down the disease,” said Bega. “It’s really realistic to think that in our lifetime. His program is still in the early phase, but he says he believes one day, there will be a method to curing Huntington’s. By stopping the way DNA creates the protein,” Bega. “Because this is a disease that has the same gene mutation that causes the same disease in everybody and we know what it is and we can identify it. Theoretically, this type of treatment would essentially silence the genes that are telling the body to create the disease. Through his research, he is trying to find new treatments for Huntington’s and studying more about a theory known as gene silencing - which attempts to stop the DNA from creating the Huntington’s trait. And about 10% of people will present under age 20,” explained Bega. About 10% of people will present later than age 60. So the average age of onset for Huntington’s Disease is around age 40. “Juvenile Huntington’s Disease is when the disease symptoms start before age 20. He is a movement disorders specialist at Northwestern Medicine. The controversy surrounding chronic Lyme disease in the medical communityĭr. She believes one day science could be the key to help cure people living with Huntington’s. But you also miss out on all the other gifts of life and the gifts of this beautiful spirit,” she said. “I understand why people want to have a baby that’s not going to have HD. But she does understand why other families choose to do so. Tulenchik is leery of using IVF to prevent having a child with the disease. Tulenchik says Elli is her greatest blessing. Her mother is her primary caregiver.Įven while battling COVID-19 herself, her mom still helps to feed, treat, and play with her daughter every day. Now Elli, 22, can no longer walk or care for herself. I did not know about Juvenile Huntington’s until I had all these question mark things happening,” said Tulenchik. I thought science and medicine are making advances every day, so we have lots of time. “I figured we had years and years before I had to worry about it. In the eyes of these new parents, this medical innovation is a miracle.Īfter two rounds of IVF, she finally gave birth even during a pandemic. Then doctors took a biopsy of the embryos and only implanted the ones without the HD gene into her womb. The program allowed them to conceive using IVF for free. Because we hadn’t heard anything and we figured with all the applications and everything it was a long shot,” said Cameron Salstrom. “We had talked about the acceptance of not having children. When the pair first started dating they ruled out having children of their own - until they received a grant from Help Cure HD. The brain disorder causes tremors, inability to talk, walk, memory loss, and eventually leads to death. “I just couldn’t imagine the guilt of knowing that I had passed that to someone knowing that there was a chance of it,” she said. She made a tough decision to get her tubes tied within 6 months. It has no known cure.Īt just 23, Rachel discovered she had Huntington’s. Huntington’s is a debilitating disorder that kills nerve cells in the brain. Salstrom said she turned to IVF so she would not give birth to a child with the deadly disease.
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