Health

Florida student, 22, said disease left him with brain damage and underweight


A student in Florida was left unable to walk up stairs and write after a deadly brain-eating amoeba that he caught from ‘cannon-balling’ into a stagnant pond left him underweight and brain damaged.

Sebastian Deleon, now 22, from Weston in Florida, has revealed his experience after catching the brain-eating amoeba — scientifically named Naegleria fowleri. He said it initially left him with a severe headache, before he became sensitive to the sun and struggled to get up. He is one of the lucky four to survive the infection out of 154 known cases

Sebastian Deleon, now 22, from Weston in Florida, has revealed his experience after catching the brain-eating amoeba — scientifically named Naegleria fowleri. He said it initially left him with a severe headache, before he became sensitive to the sun and struggled to get up. He is one of the lucky four to survive the infection out of 154 known cases

Sebastian Deleon, now 22, from Weston, is one of a lucky four people to survive an infection with the amoeba — named Naegleria fowleri — out of 154 recorded cases in the United States. He was infected six years ago at the age of 16.

In the early stages, he was struck down with a severe headache that felt like a smooth rock was ‘pushing down’ on his head. It quickly left him unable to get up and needing sunglasses ‘even when the sun wasn’t out’, prompting his parents to rush him to hospital.

Once there doctors put him on seven antibiotics and into an induced coma. When he came round about a week later, he needed some three weeks in rehabilitation to regain much of his strength. 

Experts are calling on Americans to be aware of the amoeba that lurks in waterways throughout the country, saying global warming — heating stagnant pools further north in the country — makes it a risk in other areas.

Deleon pictured learning how to walk up and down stairs again at the rehabilitation center

Deleon learning how to walk up and down stairs again

After being in a coma for about a week, Deleon was transferred to a rehabilitation center to help regain his strength. He is pictured here learning how to walk up and down stairs again

Pictured above is him strengthening his legs at the rehabilitation center called Joe Dimaggio's Children's Rehabilitation Center in Hollywood, Florida

Pictured above is him strengthening his legs at the rehabilitation center called Joe Dimaggio’s Children’s Rehabilitation Center in Hollywood, Florida

Doctors diagnosed him with the brain-eating amoeba after tests of his brain showed that he had been infected (Pictured above are amoeba that had infected him)

Doctors diagnosed him with the brain-eating amoeba after tests of his brain showed that he had been infected (Pictured above are amoeba that had infected him)

Deleon was rushed to hospital by his parents in 2016 (pictured above) after he starting suffering a severe headache

Deleon was rushed to hospital by his parents in 2016 (pictured above) after he starting suffering a severe headache

Revealing how he battled the amoeba in 2016, Deleon told ClickOrlando: ‘For the first couple of years, it was kind of hard.

‘The part that I most remember is the part that I was in rehab. It was tough, I had to, like, learn how to walk, how to write again, how to do all the basic stuff again.’

What is primary amebic meningoencephalitis?

Primary amebic meningoencephalitis is a rare and usually fatal brain infection.

It is triggered the amoeba Naegleria fowleri, which enters the body when it is taken in through the nose.

Once an infection is established, it spreads up nerves to the brain where it destroys tissue.

Patients initially experience a headache, fever, nausea and vomiting.

But in the later stages they can also face hallucinations and seizures.

About 97 percent of people who become infected with the amoeba die from the disease.

Source: CDC

Symptoms began days after being infected while he was visiting theme parks in nearby Orlando with his parents.

Initially, he had a severe headache. But, he said: ‘This headache was different. It felt more like — the description that I kept saying at the hospital was that it felt like there was a smooth rock on top of my head, and someone was pushing it down.’

It then became so severe that: ‘I couldn’t get up, and I couldn’t move around and stuff like that, so my parents were like, “OK, there’s something wrong with this boy. We need to take him somewhere”.

‘We got in the car. It felt like I was on one of those roller coasters spinning around and around and around, and I had to wear sunglasses, and the sun wasn’t even out.’

Asked where he caught it, Deleon said it was likely from the stagnant lake he had jumped into ‘about two or three times’.

The amoeba is present in small concentrations in most waterways, but when these become stagnant and heat up it multiplies posing a risk.

It infects people when water goes up their noses, but there are no known cases of it being transmitted from one person to another.

Doctors said when he arrived at the hospital in late August, Deleon was immediately put on seven different antibiotics. These included impavido, which some experts suggest may be better able to help sufferers than others.

He was then placed in a coma for about a week, and scans revealed the amoeba had done damage to his brain while he also lost about 20lbs.

But when his condition started to improve he was woken back up and discharged to Joe Dimaggio’s Children’s Rehabilitation Center to regain his strength.

During this time nurses helped him gain the strength to go up and down stairs again, and improve muscles so that he could lift more than 5lbs. 

He is now much better, and even told a medical meeting in 2017 that he was more worried about his school work than the illness.

The amoeba that triggered his illness is fatal in about 97 percent of cases, even those where treatment is delivered.

Deleon (pictured in 2016) caught the disease when he was just 16 years old. He is one of only four people in America known to have survived it

Deleon (pictured in 2016) caught the disease when he was just 16 years old. He is one of only four people in America known to have survived it

In 2017 he attended a medical conference, pictured, where he told medics he was now more worried about his school work than his infection with the amoeba

In 2017 he attended a medical conference, pictured, where he told medics he was now more worried about his school work than his infection with the amoeba

Deleon is pictured above (second from left) with family members following him being discharged from hospital

Deleon is pictured above (second from left) with family members following him being discharged from hospital

It is present in soils and freshwater worldwide in low concentrations, but typically only becomes a threat when water is heated above 115F (46C) and multiplies into much larger numbers. this happens during the summer months.

People who catch the disease initially suffer symptoms such as a headache, fever, nausea, vomiting and a stiff neck.

But in the later stages these can progress to seizures, hallucinations and an altered mental state. 

It is almost exclusively caught from swimming in hot stagnant water — when water enters the noses of swimmers —, where it infects the olfactory nerve and travels the short distance to the brain. There are no known cases yet of humans passing it between each other.

Caleb Ziegelbauer (pictured), 13, of Port Charlotte, Florida, died after suffering an infection from the brain eating amoeba

Caleb Ziegelbauer (pictured), 13, of Port Charlotte, Florida, died after suffering an infection from the brain eating amoeba

Dr Anjan Debnath, a parasitic disease expert at the University of California, San Diego, told DailyMail.com last week that the disease is ‘quite rapid’ and ‘literally eats brain tissue’.

He warned because of how rare it is doctors often misdiagnose it as another disease such as meningitis — wasting valuable time that could be used to save the patient.

There are also concerns that the amoeba is advancing north thanks to global warming. At present, it is normally only found in the southern United States.

But this year a man died after catching the amoeba from swimming in a warm lake in Iowa.

Dr Bruce Hirsch, an infectious diseases specialist at North Shore University Hospital in Manhattan, New York, warned Medicinenet recently: ‘Climate change may be playing a role [in its spread].’

The latest person to die from an infection with the bacteria was 13-year-old Caleb Ziegelbauer, from Port Charlotte, Florida.

The teenager is believed to have been infected after swimming in a river near his home on July 1 during a family outing.

Five days later he suffered fever and complained of hallucinations. 

His parents rushed him to hospital where doctors initially diagnosed him with meningitis, delaying the time it took for him to get treatment.

A week later they finally realized he was suffering from the amoeba.

He has survived over two weeks past the 17 that it generally takes for the infection to kill someone it infects. 



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