Latest news with #Creutzfeldt-JakobDisease
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".
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.
Yahoo
14-04-2025
- Health
- Yahoo
Two dead, another infected, as rare brain disease reported in one Oregon county
Two people are believed to have died of a rare, incurable brain disease within months of each other in a single Oregon county. Health officials said in a recent statement that three cases of Creutzfeldt-Jakob Disease have been found in Hood River County, 70 miles east of Portland, in the past eight months. Two of the cases resulted in death, according to The Oregonian. One of the cases was confirmed by autopsy, while two are presumptive diagnoses, the newspaper said. It is not known whether the cases are linked, the Hood River County Health Department said Friday. Health officials said that while the risk to the public remains 'extremely low' they are monitoring the situation closely. 'We're trying to look at any common risk factors that might link these cases,' Hood River County Health Department director Trish Elliot told the outlet. 'But it's pretty hard in some cases to come up with what the real cause is.' Elliot said the only way to confirm the disease is to test the brain and spinal fluid after death. The results of those tests can take months to establish. The Independent has contacted the Hood River County Health Department for more information. Creutzfeldt-Jakob causes rapidly intensifying symptoms that present movement disorders and behavioral changes, similar to Alzheimer's. The rare and deadly disorder is caused by infectious proteins called prions, which can cause small holes in the brain that resemble sponges under a microscope. There is currently no treatment or cure. Deaths typically occur 12 months after infection. According to the Centers for Disease Control and Prevention, approximately 500 to 600 new cases occur in the U.S. each year. Most cases are believed to be hereditary, linked to a genetic mutation passed on from a parent. The disease cannot be spread from person to person except through organ or tissue transplants or other exposure to infected brain or nervous tissue. In rare cases, Variant Creutzfeldt-Jakob Disease is linked to eating infected beef from cows with a related disease. Elliott said the three Hood River cases are not believed to be related to infected cattle.
Yahoo
14-04-2025
- Health
- Yahoo
Two dead, another infected, as rare brain disease reported in one Oregon county
Two people are believed to have died of a rare, incurable brain disease within months of each other in a single Oregon county. Health officials said in a recent statement that three cases of Creutzfeldt-Jakob Disease have been found in Hood River County, 70 miles east of Portland, in the past eight months. Two of the cases resulted in death, according to The Oregonian. One of the cases was confirmed by autopsy, while two are presumptive diagnoses, the newspaper said. It is not known whether the cases are linked, the Hood River County Health Department said Friday. Health officials said that while the risk to the public remains 'extremely low' they are monitoring the situation closely. 'We're trying to look at any common risk factors that might link these cases,' Hood River County Health Department director Trish Elliot told the outlet. 'But it's pretty hard in some cases to come up with what the real cause is.' Elliot said the only way to confirm the disease is to test the brain and spinal fluid after death. The results of those tests can take months to establish. The Independent has contacted the Hood River County Health Department for more information. Creutzfeldt-Jakob causes rapidly intensifying symptoms that present movement disorders and behavioral changes, similar to Alzheimer's. The rare and deadly disorder is caused by infectious proteins called prions, which can cause small holes in the brain that resemble sponges under a microscope. There is currently no treatment or cure. Deaths typically occur 12 months after infection. According to the Centers for Disease Control and Prevention, approximately 500 to 600 new cases occur in the U.S. each year. Most cases are believed to be hereditary, linked to a genetic mutation passed on from a parent. The disease cannot be spread from person to person except through organ or tissue transplants or other exposure to infected brain or nervous tissue. In rare cases, Variant Creutzfeldt-Jakob Disease is linked to eating infected beef from cows with a related disease. Elliott said the three Hood River cases are not believed to be related to infected cattle.
The Independent
14-04-2025
- Health
- The Independent
Two dead, another infected, as rare brain disease reported in one Oregon county
Two people are believed to have died of a rare, incurable brain disease within months of each other in a single Oregon county. Health officials said in a recent statement that three cases of Creutzfeldt-Jakob Disease have been found in Hood River County, 70 miles east of Portland, in the past eight months. Two of the cases resulted in death, according to The Oregonian. One of the cases was confirmed by autopsy, while two are presumptive diagnoses, the newspaper said. It is not known whether the cases are linked, the Hood River County Health Department said Friday. Health officials said that while the risk to the public remains 'extremely low' they are monitoring the situation closely. 'We're trying to look at any common risk factors that might link these cases,' Hood River County Health Department director Trish Elliot told the outlet. 'But it's pretty hard in some cases to come up with what the real cause is.' Elliot said the only way to confirm the disease is to test the brain and spinal fluid after death. The results of those tests can take months to establish. The Independent has contacted the Hood River County Health Department for more information. Creutzfeldt-Jakob causes rapidly intensifying symptoms that present movement disorders and behavioral changes, similar to Alzheimer's. The rare and deadly disorder is caused by infectious proteins called prions, which can cause small holes in the brain that resemble sponges under a microscope. There is currently no treatment or cure. Deaths typically occur 12 months after infection. According to the Centers for Disease Control and Prevention, approximately 500 to 600 new cases occur in the U.S. each year. Most cases are believed to be hereditary, linked to a genetic mutation passed on from a parent. The disease cannot be spread from person to person except through organ or tissue transplants or other exposure to infected brain or nervous tissue. In rare cases, Variant Creutzfeldt-Jakob Disease is linked to eating infected beef from cows with a related disease. Elliott said the three Hood River cases are not believed to be related to infected cattle.
