Latest news with #CJD
The Hindu
7 days ago
- Health
- The Hindu
Beyond memory loss: The lesser-known dementias that deserve attention
When people hear the word dementia, they are very likely to immediately think of Alzheimer's disease. And while Alzheimer's is the most common form, accounting for 60 to 80 % of cases worldwide, it is far from the only type of dementia. A range of other, lesser-known dementias can be equally devastating, and recognising them early can lead to better care and improved quality of life. So, what are these lesser-known types of dementia? Vascular Dementia Vascular dementia is the second-most common type of dementia, and is estimated to be about 40 % of all dementia cases in India. It is triggered by reduced blood flow to the brain, often after strokes or due to chronic conditions such as hypertension and diabetes. Its sudden onset, rapid decline or step-by-step decline after 'mini strokes', and link to future strokes, makes this type very dangerous. However, unlike Alzheimer's, it's often preventable. Early diagnosis, blood pressure and sugar control, and a healthy lifestyle can delay its progression. Frontotemporal Dementia Sometimes misdiagnosed as a psychiatric illness, frontotemporal dementia (FTD) is an umbrella term for brain disorders that affect the frontal and temporal lobes of the brain. These sites are associated with personality, behaviour and language, and thus some people undergo personality changes or become more impulsive or emotionally indifferent when suffering from this condition. About 60 % of people diagnosed with FTD fall within the age bracket of 45 to 64. Currently, there is no cure for FTD. In addition to this, because it affects a younger age group than Alzheimer's usually does, it becomes extremely distressing for families and often leads to early dependency and care needs. Lewy Body Dementia Lewy body dementia (LBD) is marked by abnormal protein deposits in the brain that disrupt both cognitive functions and physical abilities. It causes problems with coordination and balance, vivid visual hallucinations, muscle stiffness, difficulties with concentration, memory issues and severe sensitivity to certain medications. Due to the symptoms intersecting with other kinds of dementia, it is tricky for doctors to lock down on the diagnosis. Multiple tests are required to diagnose LBD. While there is no cure for this kind of dementia, medical and non-medical treatments such as physical and occupational therapies are recommended to keep symptoms in control as much as possible. Creutzfeldt-Jakob disease Creutzfeldt-Jakob disease (CJD) is a rare but devastating brain disorder caused when a type of protein, prions, undergo a change. While the symptoms of CJD are very similar to those of Alzheimer's, this disease usually gets worse faster and leads to death. Though only one or two cases of CJD are diagnosed per million people around the world, its aggressive progression and lack of a cure make it especially alarming. Mixed dementia Mixed dementia is a blend, most often Alzheimer's disease combined with vascular dementia, and sometimes Lewy body dementia and other types of dementia. This mix leads to overlapping symptoms, and hence, no definitive symptoms are associated with it. A report states that at least one in 10 people with dementia is diagnosed as having mixed dementia. This diagnosis is confirmed only when the doctor finds clear signs of at least two different types of dementia. Why awareness matters Alzheimer's, vascular dementia, Lewy body dementia, frontotemporal dementia, and Creutzfeldt-Jakob disease each have unique causes, symptoms, progression, and treatment responses. Identifying the correct type helps doctors tailor care to individual cases, whether it is medication, lifestyle changes, or managing stroke risk. It also helps families understand what to expect – memory loss vs. personality changes, gradual vs. sudden decline. Without an accurate diagnosis, people may miss out on treatments that could ease symptoms or slow progression. Awareness is the first step towards better outcomes and quality of life. Memory loss is just one piece of the dementia puzzle. If you or a loved one is experiencing unexplained behavioural changes, sleep disturbances, or movement issues, talk to a healthcare provider. Dementia isn't one-size-fits-all, and knowing the differences could change the course of care. (Dr. Usha Humbi is a consultant neurologist at Narayana Health City, Bengaluru.
The Advertiser
16-06-2025
- Health
- The Advertiser
'We were never told it was an experimental program': Mad cow disease hell
Verna Dabrowa has lived for 40 years with the terrifying knowledge that she has a higher risk of contracting a mad cow-type disease. Living under this shadow caused her severe mental strain, including suicidal thoughts, depression, a lot of anger and lack of sleep. Mrs Dabrowa, 72, was first treated for infertility in January 1985 under the Australian Human Pituitary Hormones Program. The hormones were taken from dead bodies. Some batches were contaminated with infectious prions. These abnormal brain proteins cause Creutzfeldt-Jakob Disease (CJD), a rare and fatal brain disease with no cure. "We were never told it was an experimental program. We didn't have informed consent," Mrs Dabrowa said. From 1967 to 1985, more than 2000 people received the treatments in Australia. Some were given human growth hormones as a treatment for short stature. Others, like Mrs Dabrowa, were given human pituitary gland hormones for infertility. Contaminated hormones caused four deaths and one probable death in Australia. Four of these cases had pituitary hormones and one had the growth hormones. Those given the hormones had an increased risk of developing CJD. However, the exact risk was unknown due to doctors keeping poor records of the hormone batches. When the scandal broke in the mid-1980s, Mrs Dabrowa said the government was "very secretive" about the details. "They tried to keep it as quiet as possible. The whole thing was like a spy drama," she said. She learned she was a victim after reading a small item in a newspaper in June 1985, asking those affected to contact the department. The issue became a global scandal, with numerous deaths in other countries including: France (122), UK (79), US (35) and New Zealand (six). The human hormones used in the program were taken from cadavers because they were the only source available at the time. They are now produced synthetically. The last reported death in Australia was in 1991. NSW Health has estimated the incubation period of the disease from injections of contaminated pituitary hormones at five to 30 years. However, a federal health department review in 2021 said a 2019 case in the UK had an incubation period of more than 40 years. Mrs Dabrowa, who worked as a nurse educator, said she tried to "put it in the back of my mind". "I get through it by speaking about it. I went through a stage where I'd get really stressed out," she said. When she has medical procedures, such as surgery, dental work or a blood test, "I have to provide a letter of authority from the government that I'm on the CJD list". She'd feel guilty if she didn't disclose this. "I'm careful of my blood all the time. I'm terrified I could kill someone," she said. When she had an operation at John Hunter Hospital, she said "only the nurses from England knew anything about it". "Every time I go to a hospital, I say please be careful of my blood because I'm on the CJD register. "They say, 'What's that?' I say have you heard of mad cow disease or Creutzfeldt-Jakob Disease?" Mad cow disease, also known as Variant CJD, has never been identified in Australia. CJD, however, affects about one in a million people in Australia each year. Mrs Dabrowa said being on the CJD list can be "overwhelming". She felt like a "pariah". "I can't give blood or organs. It's horrible what my husband Kevin and I have had to go through, as he has supported me through this." She'd not had contact from the health department in years, since newsletters to affected people ceased in 2004. "My biggest beef now is why should it still be my responsibility to inform every hospital I go to." A spokesperson for the federal health department said "people who were participants in the Australian Human Pituitary Hormones Program are required to inform treating medical practitioners". This was to ensure they can "undertake effective infection and prevention control to mitigate transmission of CJD". The department was "currently in the process of updating the CJD infection and prevention control guidelines". This was to ensure they "reflect current evidence and international practises". The update sought to support affected people "through their engagement with the health system". Verna Dabrowa has lived for 40 years with the terrifying knowledge that she has a higher risk of contracting a mad cow-type disease. Living under this shadow caused her severe mental strain, including suicidal thoughts, depression, a lot of anger and lack of sleep. Mrs Dabrowa, 72, was first treated for infertility in January 1985 under the Australian Human Pituitary Hormones Program. The hormones were taken from dead bodies. Some batches were contaminated with infectious prions. These abnormal brain proteins cause Creutzfeldt-Jakob Disease (CJD), a rare and fatal brain disease with no cure. "We were never told it was an experimental program. We didn't have informed consent," Mrs Dabrowa said. From 1967 to 1985, more than 2000 people received the treatments in Australia. Some were given human growth hormones as a treatment for short stature. Others, like Mrs Dabrowa, were given human pituitary gland hormones for infertility. Contaminated hormones caused four deaths and one probable death in Australia. Four of these cases had pituitary hormones and one had the growth hormones. Those given the hormones had an increased risk of developing CJD. However, the exact risk was unknown due to doctors keeping poor records of the hormone batches. When the scandal broke in the mid-1980s, Mrs Dabrowa said the government was "very secretive" about the details. "They tried to keep it as quiet as possible. The whole thing was like a spy drama," she said. She learned she was a victim after reading a small item in a newspaper in June 1985, asking those affected to contact the department. The issue became a global scandal, with numerous deaths in other countries including: France (122), UK (79), US (35) and New Zealand (six). The human hormones used in the program were taken from cadavers because they were the only source available at the time. They are now produced synthetically. The last reported death in Australia was in 1991. NSW Health has estimated the incubation period of the disease from injections of contaminated pituitary hormones at five to 30 years. However, a federal health department review in 2021 said a 2019 case in the UK had an incubation period of more than 40 years. Mrs Dabrowa, who worked as a nurse educator, said she tried to "put it in the back of my mind". "I get through it by speaking about it. I went through a stage where I'd get really stressed out," she said. When she has medical procedures, such as surgery, dental work or a blood test, "I have to provide a letter of authority from the government that I'm on the CJD list". She'd feel guilty if she didn't disclose this. "I'm careful of my blood all the time. I'm terrified I could kill someone," she said. When she had an operation at John Hunter Hospital, she said "only the nurses from England knew anything about it". "Every time I go to a hospital, I say please be careful of my blood because I'm on the CJD register. "They say, 'What's that?' I say have you heard of mad cow disease or Creutzfeldt-Jakob Disease?" Mad cow disease, also known as Variant CJD, has never been identified in Australia. CJD, however, affects about one in a million people in Australia each year. Mrs Dabrowa said being on the CJD list can be "overwhelming". She felt like a "pariah". "I can't give blood or organs. It's horrible what my husband Kevin and I have had to go through, as he has supported me through this." She'd not had contact from the health department in years, since newsletters to affected people ceased in 2004. "My biggest beef now is why should it still be my responsibility to inform every hospital I go to." A spokesperson for the federal health department said "people who were participants in the Australian Human Pituitary Hormones Program are required to inform treating medical practitioners". This was to ensure they can "undertake effective infection and prevention control to mitigate transmission of CJD". The department was "currently in the process of updating the CJD infection and prevention control guidelines". This was to ensure they "reflect current evidence and international practises". The update sought to support affected people "through their engagement with the health system". Verna Dabrowa has lived for 40 years with the terrifying knowledge that she has a higher risk of contracting a mad cow-type disease. Living under this shadow caused her severe mental strain, including suicidal thoughts, depression, a lot of anger and lack of sleep. Mrs Dabrowa, 72, was first treated for infertility in January 1985 under the Australian Human Pituitary Hormones Program. The hormones were taken from dead bodies. Some batches were contaminated with infectious prions. These abnormal brain proteins cause Creutzfeldt-Jakob Disease (CJD), a rare and fatal brain disease with no cure. "We were never told it was an experimental program. We didn't have informed consent," Mrs Dabrowa said. From 1967 to 1985, more than 2000 people received the treatments in Australia. Some were given human growth hormones as a treatment for short stature. Others, like Mrs Dabrowa, were given human pituitary gland hormones for infertility. Contaminated hormones caused four deaths and one probable death in Australia. Four of these cases had pituitary hormones and one had the growth hormones. Those given the hormones had an increased risk of developing CJD. However, the exact risk was unknown due to doctors keeping poor records of the hormone batches. When the scandal broke in the mid-1980s, Mrs Dabrowa said the government was "very secretive" about the details. "They tried to keep it as quiet as possible. The whole thing was like a spy drama," she said. She learned she was a victim after reading a small item in a newspaper in June 1985, asking those affected to contact the department. The issue became a global scandal, with numerous deaths in other countries including: France (122), UK (79), US (35) and New Zealand (six). The human hormones used in the program were taken from cadavers because they were the only source available at the time. They are now produced synthetically. The last reported death in Australia was in 1991. NSW Health has estimated the incubation period of the disease from injections of contaminated pituitary hormones at five to 30 years. However, a federal health department review in 2021 said a 2019 case in the UK had an incubation period of more than 40 years. Mrs Dabrowa, who worked as a nurse educator, said she tried to "put it in the back of my mind". "I get through it by speaking about it. I went through a stage where I'd get really stressed out," she said. When she has medical procedures, such as surgery, dental work or a blood test, "I have to provide a letter of authority from the government that I'm on the CJD list". She'd feel guilty if she didn't disclose this. "I'm careful of my blood all the time. I'm terrified I could kill someone," she said. When she had an operation at John Hunter Hospital, she said "only the nurses from England knew anything about it". "Every time I go to a hospital, I say please be careful of my blood because I'm on the CJD register. "They say, 'What's that?' I say have you heard of mad cow disease or Creutzfeldt-Jakob Disease?" Mad cow disease, also known as Variant CJD, has never been identified in Australia. CJD, however, affects about one in a million people in Australia each year. Mrs Dabrowa said being on the CJD list can be "overwhelming". She felt like a "pariah". "I can't give blood or organs. It's horrible what my husband Kevin and I have had to go through, as he has supported me through this." She'd not had contact from the health department in years, since newsletters to affected people ceased in 2004. "My biggest beef now is why should it still be my responsibility to inform every hospital I go to." A spokesperson for the federal health department said "people who were participants in the Australian Human Pituitary Hormones Program are required to inform treating medical practitioners". This was to ensure they can "undertake effective infection and prevention control to mitigate transmission of CJD". The department was "currently in the process of updating the CJD infection and prevention control guidelines". This was to ensure they "reflect current evidence and international practises". The update sought to support affected people "through their engagement with the health system". Verna Dabrowa has lived for 40 years with the terrifying knowledge that she has a higher risk of contracting a mad cow-type disease. Living under this shadow caused her severe mental strain, including suicidal thoughts, depression, a lot of anger and lack of sleep. Mrs Dabrowa, 72, was first treated for infertility in January 1985 under the Australian Human Pituitary Hormones Program. The hormones were taken from dead bodies. Some batches were contaminated with infectious prions. These abnormal brain proteins cause Creutzfeldt-Jakob Disease (CJD), a rare and fatal brain disease with no cure. "We were never told it was an experimental program. We didn't have informed consent," Mrs Dabrowa said. From 1967 to 1985, more than 2000 people received the treatments in Australia. Some were given human growth hormones as a treatment for short stature. Others, like Mrs Dabrowa, were given human pituitary gland hormones for infertility. Contaminated hormones caused four deaths and one probable death in Australia. Four of these cases had pituitary hormones and one had the growth hormones. Those given the hormones had an increased risk of developing CJD. However, the exact risk was unknown due to doctors keeping poor records of the hormone batches. When the scandal broke in the mid-1980s, Mrs Dabrowa said the government was "very secretive" about the details. "They tried to keep it as quiet as possible. The whole thing was like a spy drama," she said. She learned she was a victim after reading a small item in a newspaper in June 1985, asking those affected to contact the department. The issue became a global scandal, with numerous deaths in other countries including: France (122), UK (79), US (35) and New Zealand (six). The human hormones used in the program were taken from cadavers because they were the only source available at the time. They are now produced synthetically. The last reported death in Australia was in 1991. NSW Health has estimated the incubation period of the disease from injections of contaminated pituitary hormones at five to 30 years. However, a federal health department review in 2021 said a 2019 case in the UK had an incubation period of more than 40 years. Mrs Dabrowa, who worked as a nurse educator, said she tried to "put it in the back of my mind". "I get through it by speaking about it. I went through a stage where I'd get really stressed out," she said. When she has medical procedures, such as surgery, dental work or a blood test, "I have to provide a letter of authority from the government that I'm on the CJD list". She'd feel guilty if she didn't disclose this. "I'm careful of my blood all the time. I'm terrified I could kill someone," she said. When she had an operation at John Hunter Hospital, she said "only the nurses from England knew anything about it". "Every time I go to a hospital, I say please be careful of my blood because I'm on the CJD register. "They say, 'What's that?' I say have you heard of mad cow disease or Creutzfeldt-Jakob Disease?" Mad cow disease, also known as Variant CJD, has never been identified in Australia. CJD, however, affects about one in a million people in Australia each year. Mrs Dabrowa said being on the CJD list can be "overwhelming". She felt like a "pariah". "I can't give blood or organs. It's horrible what my husband Kevin and I have had to go through, as he has supported me through this." She'd not had contact from the health department in years, since newsletters to affected people ceased in 2004. "My biggest beef now is why should it still be my responsibility to inform every hospital I go to." A spokesperson for the federal health department said "people who were participants in the Australian Human Pituitary Hormones Program are required to inform treating medical practitioners". This was to ensure they can "undertake effective infection and prevention control to mitigate transmission of CJD". The department was "currently in the process of updating the CJD infection and prevention control guidelines". This was to ensure they "reflect current evidence and international practises". The update sought to support affected people "through their engagement with the health system".
The Age
08-06-2025
- Entertainment
- The Age
Tapping into board game culture
'While on Grumpy Grandpa child-minding duty recently and playing the board game Monopoly Dogs with my four-year-old grandson, watching him count out the play-money got me wondering,' notes (geddit?) Neville Pleffer of Rooty Hill. 'Will future Monopoly games come with charge cards, EFTPOS machines and the encroaching card surcharge? Or has it already happened? Oh, the joy of counting those paper notes.' 'My Baby Book (C8) had a space for quaint sayings,' says Robyn Lewis of Raglan. 'I remember asking my mother why the page had no quotes. She explained there was not enough space to write 'all the interesting things' I said to the family or her friends.' 'Please tell me the practice of eating brains (C8) ceased with the advent of publicity about Creutzfeldt-Jakob disease (CJD)?' implores Jo Rainbow of Orange. 'Only zombies like brains.' Rhonda Ellis' yarn on air-rifle combat (C8) certainly got Tony Winton of Mosman fired up: 'At Sirius Cove in the late 1940s, the kids on the western side had Daisy air rifles, and on the eastern side we had German-made Diane air rifles, which were brought from Germany after WWII. There were lots and lots of bangs and nobody was ever hurt, except me, who received a dart to my right thigh. All this friendly action was to stop when the Mosman police arrived and we all disappeared. Even as kids we thought that our shooting fun had better stop.' 'My brother, when about 10, organised and held the inaugural BB gun championship of suburban Bexley in the 1960s,' recalls Janice Creenaune of Austinmer. 'He painted one pellet gold as the prize and encased it in a little container. Sharing armoury was essential, and practice minimal, but serious backyard shooting ruled (if maybe not legal). A winner was eventually found and little Ralphie went home quite chuffed.' 'So when a bird flies into an engine at the new Nancy Bird Walton Airport, the headlines will read 'Bird stops bird on Bird'?' asks George Zivkovic of Northmead. 'The Australian government is this year distributing the highest amount of free money ever (in the form of welfare payments),' notes Bill Leigh of West Pennant Hills. 'Meanwhile, the National Parks and Wildlife Service ask us, 'Please Do Not Feed the Animals'. The stated reason being 'the animals will grow dependent on handouts and will not learn to take care of themselves'. Funny how that works.'
Sydney Morning Herald
08-06-2025
- Entertainment
- Sydney Morning Herald
Tapping into board game culture
'While on Grumpy Grandpa child-minding duty recently and playing the board game Monopoly Dogs with my four-year-old grandson, watching him count out the play-money got me wondering,' notes (geddit?) Neville Pleffer of Rooty Hill. 'Will future Monopoly games come with charge cards, EFTPOS machines and the encroaching card surcharge? Or has it already happened? Oh, the joy of counting those paper notes.' 'My Baby Book (C8) had a space for quaint sayings,' says Robyn Lewis of Raglan. 'I remember asking my mother why the page had no quotes. She explained there was not enough space to write 'all the interesting things' I said to the family or her friends.' 'Please tell me the practice of eating brains (C8) ceased with the advent of publicity about Creutzfeldt-Jakob disease (CJD)?' implores Jo Rainbow of Orange. 'Only zombies like brains.' Rhonda Ellis' yarn on air-rifle combat (C8) certainly got Tony Winton of Mosman fired up: 'At Sirius Cove in the late 1940s, the kids on the western side had Daisy air rifles, and on the eastern side we had German-made Diane air rifles, which were brought from Germany after WWII. There were lots and lots of bangs and nobody was ever hurt, except me, who received a dart to my right thigh. All this friendly action was to stop when the Mosman police arrived and we all disappeared. Even as kids we thought that our shooting fun had better stop.' 'My brother, when about 10, organised and held the inaugural BB gun championship of suburban Bexley in the 1960s,' recalls Janice Creenaune of Austinmer. 'He painted one pellet gold as the prize and encased it in a little container. Sharing armoury was essential, and practice minimal, but serious backyard shooting ruled (if maybe not legal). A winner was eventually found and little Ralphie went home quite chuffed.' 'So when a bird flies into an engine at the new Nancy Bird Walton Airport, the headlines will read 'Bird stops bird on Bird'?' asks George Zivkovic of Northmead. 'The Australian government is this year distributing the highest amount of free money ever (in the form of welfare payments),' notes Bill Leigh of West Pennant Hills. 'Meanwhile, the National Parks and Wildlife Service ask us, 'Please Do Not Feed the Animals'. The stated reason being 'the animals will grow dependent on handouts and will not learn to take care of themselves'. Funny how that works.'
Yahoo
24-05-2025
- Health
- Yahoo
A 58-year-old woman has died of a rare neurological condition. The cause of death? Being injected with hormones taken from a corpse.
When you buy through links on our articles, Future and its syndication partners may earn a commission. A woman in the U.S. has died from severe neurological symptoms that were caused by an abnormal protein — which she was unknowingly injected with nearly 50 years earlier. Having shown no neurological symptoms in the decades since the injection, the 58-year-old recently began experiencing tremors and changes in her ability to balance while walking. In the following weeks, she developed urinary incontinence, difficulty speaking and abnormal breathing. After being admitted to hospital, she entered a coma and later died, according to a case report published May 14 in the journal Emerging Infectious Diseases. A follow-up MRI scan while she was in hospital revealed damage to her brain, and further testing showed positive results for an abnormal protein called a prion. Prions are found in cell membranes, the wall that surrounds every one of our cells, and are thought to be one of the molecules involved in cellular communication and other interactions. Though prions can exist safely in the body, when these proteins accumulate in the brain they can cause surrounding proteins to contort and "misfold," damaging nerve cells. Infection with an abnormally 'folded' prion from an external source – like eating contaminated meat, as in the case of 'mad cow' disease – can also spark a chain of misfolding in the body. The brain damage caused by prion diseases is always fatal, with most patients dying within one year of first developing symptoms, according to Mayo Clinic. In this case, the woman was diagnosed with Creutzfeldt-Jakob Disease (CJD), an extremely rare and fatal brain wasting disease caused by prions. Related: Here's how dangerous, deadly prions spread to the brain It is thought the woman was given prion-infected hormones sometime between 1971 and 1980, while receiving treatment for a condition called panhypopituitarism. People with this condition have a lack of hormones produced by the pituitary gland, the organ that secretes a range of hormones including those involved in growth and sexual development. In the 1970s, panhypopituitarism was treated by injecting patients with human growth hormones extracted from the healthy pituitary glands of people who had died. At the time, this was common practice — as well as being used to treat pituitary conditions, hormones from cadavers were also given to women whose ovaries were not producing eggs. However, in 1985 researchers identified the first U.S. outbreak of CJD related to treatments with cadaver-derived growth hormones. The treatment was quickly suspended, and later a synthetic alternative hormone, produced by genetic engineering, was approved by the Food and Drug Administration (FDA). RELATED STORIES — Alzheimer's comes in at least 5 distinct forms, study reveals — Shingles vaccine may directly guard against dementia, study hints — 13 proteins tied to brain aging seem to spike at ages 57, 70 and 78 So far, 0.4% of those treated in the U.S with growth hormones taken from the organs of deceased individuals have gone on to develop CJD. How these hormones were infected with prions is still unknown, and scientists cannot yet explain why there is such a long latency period between the infection and the symptoms arising. There is currently no treatment available to those with CJD, or any other form of prion disease. However, ongoing research projects seek to uncover treatments for the conditions. The researchers involved in the recent case study said that while the number of people developing CJD as a result of growth hormone treatment has slowed over the years, it is still possible that new cases will arise.
