Household elevating cash for analysis after daughter was identified with uncommon genetic dysfunction

CRESTVIEW, Fla. (WJHG / WECP) – At first glance, Carson Talbert looks like a normal, happy one-year-old, but was diagnosed with a rare genetic disorder when Carson was less than a month old.

“It’s called homocystinuria because of severe MTHFR deficiency,” said Grace Talbert, Carson’s mother. “There are only about 50 documented cases worldwide.”

Since her diagnosis, Carson has been on drugs that appear to help.

“There are little things my daughter should probably be doing but not doing,” Talbert. “Fortunately, she is really fine because she was diagnosed early and started medication early. Of all MTHFR-severe patients, it is one of the better cases. Fortunately, but that’s because she started medication after three weeks. “

However one fears that her mother has the unknown.

“Personally, I have never met an adult with it. I mostly see younger children so I don’t know what their life will be like as she gets older. There really is no one to compare it to, and there really is no one to compare to being diagnosed so early. “

HCU has no cure, but the Talbert family has started Fundraiser To raise money for research to hopefully find one one day.

“My daughters write homocystinuria because of severe MTHFR deficiency, no studies are ongoing,” said Talbert. “We hope that maybe a cure will be found in about 20 years, hopefully. But realistically this may not be the case, especially if there are no funds for research. “

Until a cure is found, her parents will do whatever they can to make Carson laugh and have fun with their big sister.

According to Carson’s parents, after their daughters were diagnosed, they were tested for HCU and discovered they were both carriers.

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Does giving cash to folks with substance use dysfunction ‘allow’ them? It’s difficult.

Money is just one of the currencies used to keep drug use going. People with SUD who are financially deprived of their rights can instead turn to riskier means to financial support B. Selling drugs, having transactional sex, or operating on credit with their dealer.

The relationship between substance use disorders and consumer spending is complex. Some research has documented it increased spending on drugs and increased risk for Overdose after cash incursions such as government checks. but other studies have also described an opposite trend, namely that higher cash payments do not increase drug use, but increase spending on essentials like food and shelter – suggesting that depriving drug users of resources of survival will also limit access to funds.

Having an addiction is a financial burden. It is often associated with the loss of critical resources such as employment, financial support and housing. Responding to a person’s drug use by “cutting them off” reinforces and sometimes even starts a cycle of poverty and homelessness.

A “hard love” approach is widespread, sometimes from seemingly credible sources. In part because it resonates with families and people affected by addiction, it promotes the healing belief that consequences can correct addictive behaviors. In some cases it can be. But in many, if not most, cases, this strategy goes against the definition of addiction – continued drug use despite negative consequences – and can cause permanent and fatal damage.

Alicia Ventura, director of special projects and research at Boston Medical Center’s Office-Based Addition Treatment Program, works with families who are struggling to best support their addicted loved ones. She says, “When families learn that a loved one is using alcohol or other drugs, it is impossible to protect them from myths about how to treat the family member who is using them. Myths about ‘enabling’, ‘co-dependency’, the ‘need to bottom out’ are omnipresent in society. “

Ventura goes on to describe how many families feel pressured to “cut off” their loved ones from financial support or to steal resources such as cell phones, cars or apartments. “These myths can be used to shame families who support their loved ones who are involved with drug use,” says Ventura.

Not surprisingly, families get into conflict; the message of cutting off people with addiction is everywhere. It is enshrined in federal and state guidelines, such as Social benefits and SNAP benefits, and even endorsed by some treatment centers. In the meantime, loved ones must deal with the pain and worry of watching a family member plunge into a terminal illness without assistance – not to mention the pain of people with addictions who experience it firsthand.

The assumption that people with SUD are simply wasting all of their money on drugs adds a cultural stigma that can be harmful to them. The nuances that current research and spending decisions show by people with SUD seem to be lacking in much of the public debate about how to help people in our community who use drugs. We need to start calling the notion of “cutting off” someone who uses drugs for what it is – a risky intervention that can have enormous negative consequences.

Lawyers and treatment centers offering this notion as a broad solution to substance use cannot go unchallenged. When necessary, the pursuit of financial alienation should be handled with extreme caution. All in all, we need to evaluate the way we think and talk about people with SUD in relation to their finances. Believe, and I would say the lie we tell ourselves, is that we help people by not helping people. We cannot continue to promote financial stability as a recovery mechanism while turning a blind eye to the routine financial disenfranchisement of people with substance use disorders.

Alex Woodruff is a health sciences specialist at the VA Boston Health System and the Partner center for evidence-based policy resources.