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Children with cystic fibrosis aren’t automatically eligible for ‘make-a-wish’

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Cystic fibrosis — a progressive genetic disease that affects the lungs, pancreas, and other organs — is Wishes don’t come true automatically From the Make-A-Wish Foundation from January 2024.

A non-profit foundation that grants wishes to children with critical illnesses made the decision because there have been so many great improvements in the treatment of the condition. They often did not survive past their twenties, but many now live longer.

sick children are be a princess,in fact travel in space with a real astronaut, or chicken coop mansion But it will be considered on a case-by-case basis, the foundation announced last week.

Similar changes were made for people living with HIV/AIDS under the age of 18.

A child with cystic fibrosis is eligible for the wish if the condition is “with additional complications or factors that make the current situation critical.” endanger their lives.

In an update to its website, the Make-A-Wish Foundation said, “We understand that this decision was not taken lightly and may cause frustration and disappointment.” Similarly, we will carefully consider any CF request that a family member, legal guardian, medical professional, or potential wish child believes meets our guidelines.”

Dr. Bruce Marshall, chief medical officer of the Cystic Fibrosis Foundation, told BuzzFeed News that Make-A-Wish worked with CFF to update standards appropriately. It is based on the individual living with the disease, not the disease itself. ”

Overall, Marshall said he’s excited about what this change will ultimately mean for the approximately 40,000 children and adults with cystic fibrosis in the United States.

Cystic fibrosis is an incredibly individualized disease and not everyone living with CF will benefit from the innovative treatments that currently exist. The decision to renew reflects the incredible story of cystic fibrosis.”

With improved treatment and care, people born with cystic fibrosis today are expected to live 15 years longer than those born 10 years ago, with more than half expected to live 53 years compared to 38 years earlier. Expected to live. People born in the late 1990s were expected to live only to their early 30s. In 1955, children with cystic fibrosis rarely reached adulthood.

Today, 60% of people with the disease are adults who can go to college, pursue careers, and have families. Advances in care have turned life’s simple pleasures into great victories. For example, patients with cystic fibrosis may Blow up a balloon and follow the kids on the soccer field.

The disease is complex and affects everyone in different ways and to varying degrees. It is caused by mutations in certain genes, causing a buildup of thick mucus in various organs. Mucus in the lungs clogs the airways and traps bacteria, causing infections and difficulty breathing. Pancreatic mucus prevents the body from absorbing nutrients from food, causing malnutrition and poor growth. Liver mucus can cause liver disease.

Common symptoms of cystic fibrosis include persistent cough, frequent lung infections such as pneumonia and bronchitis, wheezing, greasy or bulky stools, chronic sinus infections, enlarged fingertips and toes, and rectal prolapse. (when part of the large intestine comes out of the anus), salty and so on. – Taste skin, and difficulty in defecation.

Most people are diagnosed by the age of two, but some are diagnosed later in life. Cystic fibrosis is the most common and life-threatening genetic disease in the United States.

Fortunately, new therapies and expanded eligibility for treatment have greatly improved the quality of life for patients.

in the past two years, Significant reduction in worsening pulmonary symptoms in people with cystic fibrosis. In 2019, 41% of adults and 22% of children reported exacerbations. In 2021, these percentages will drop to 14% and 10% respectively.

Experts say the pandemic has raised awareness of infection prevention and increased use of Trikafta, the brand name for a three-drug combination known as cystic fibrosis transmembrane conductance regulator modulator therapy. They work by correcting certain protein malfunctions caused by genetic mutations.

There are four different CFTR modulators: Trikafta (elexacaftor/tezacaftor/ivacaftor), Symdeko (tezacaftor/ivacaftor), Orkambi (lumacaftor/ivacaftor), and Kalydeco (ivacaftor).

Lung transplants have also declined dramatically since 2016, when 271 people with cystic fibrosis reportedly received transplants. In 2021, only 52 people will have surgery.

Other treatments available for people with cystic fibrosis include clearing the airways to loosen and remove mucus from the lungs, inhaling drugs to open the airways and fight infections, and pancreatic enzyme supplements. to improve nutrient absorption.

However, many of these treatments require out-of-pocket costs. Data show that 41% of all people with cystic fibrosis and 52% of her children under the age of 10 have Medicaid, a government-funded health plan for people with limited income and resources. I’m here.

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