Childhood Alzheimer's?
No one wants to watch a loved one lose him or herself slowly, even if the person has lived a full, long life. Can you imagine watching a young child go through the debilitating effects of Alzheimer's?
For the last four years, a girl named Isobel Jeffrey has been suffering the gradual decrease of function that is similar to Alzheimer's. Isobel is now only 13 years old and was first diagnosed with early-onset dementia at age nine.
Other cases I've read about "early onset" referred to patients in their 40s or 50s. And these early onset patients are still only half the age of the majority of Alzheimer's patients that are in their 70s and 80s. What's interesting is that, as of now, there are around 100 different types of dementia (one of which is Alzheimer's, which affects 4.5 million people in the US). And about one in twelve million young children have dementia worldwide. Some instances of childhood dementia are treatable as some symptoms can be delayed with certain medicines.
For Isobel, nothing they've tried has worked. At nine she started slurring and suffering a lot of the same symptoms that Alzheimer's patients of eight times her age experience. And in just a few years, she went from speaking strangely and almost "drunk," as her mother recalls, to needing 24-hour care. Her mother and primary, full-time caregiver has watched her daughter's cognitive function decrease over time. Isobel's limited mobility and loss of verbal skills is likely to continue to get worse. Right now she has not responded to any treatment or medication. And despite all the testing, there have been no conclusive or hopeful results yet. The worst part, her mother says, is that "she is semi-aware of the fact she is losing her skills."
Since dementia is not exactly a disease, but instead a group of symptoms that accompany another disease, there are several conditions that can lead to or coincide with neurodevelopmental regression or dementia. Including many that affect young children. Here is a list of conditions that involve dementia in children. (I'm working on future blog post about childhood dementia and the childhood diseases that can potentially lead to dementia.)
Does anyone know if there have been other cases of Alzheimer's, itself, among young people? The article on Isobel was just released this weekend, so I will be watching this one to see what other stories develop. Hopefully doctors will continue to try new treatments and figure out how to slow her degenerative symptoms.
This story just reminds me how intricate our brains are and how far we still have to go in understanding Alzheimer's. And though it is extremely tragic to imagine a child losing their life at all (slowly, over time or more quickly) these are the sort of cases that, I think, help raise awareness for illnesses. With these sort of news stories, we are reminded that there is still a lot to learn about our brains, how they age, and how they adapt to both genetic factors and environmental influences.
What are your thoughts? Have you been affected by early onset Alzheimer's as a caregiver or patient? What do you think we, as health activists, can do to bring awareness to this disease and other types of dementia?
Join the Alzheimer's Group
Learn more about Alzheimer's here
Check out my post on the WEGO Health blog about a few of the latest Alzheimer's studies
For the last four years, a girl named Isobel Jeffrey has been suffering the gradual decrease of function that is similar to Alzheimer's. Isobel is now only 13 years old and was first diagnosed with early-onset dementia at age nine.
Other cases I've read about "early onset" referred to patients in their 40s or 50s. And these early onset patients are still only half the age of the majority of Alzheimer's patients that are in their 70s and 80s. What's interesting is that, as of now, there are around 100 different types of dementia (one of which is Alzheimer's, which affects 4.5 million people in the US). And about one in twelve million young children have dementia worldwide. Some instances of childhood dementia are treatable as some symptoms can be delayed with certain medicines.
For Isobel, nothing they've tried has worked. At nine she started slurring and suffering a lot of the same symptoms that Alzheimer's patients of eight times her age experience. And in just a few years, she went from speaking strangely and almost "drunk," as her mother recalls, to needing 24-hour care. Her mother and primary, full-time caregiver has watched her daughter's cognitive function decrease over time. Isobel's limited mobility and loss of verbal skills is likely to continue to get worse. Right now she has not responded to any treatment or medication. And despite all the testing, there have been no conclusive or hopeful results yet. The worst part, her mother says, is that "she is semi-aware of the fact she is losing her skills."
Since dementia is not exactly a disease, but instead a group of symptoms that accompany another disease, there are several conditions that can lead to or coincide with neurodevelopmental regression or dementia. Including many that affect young children. Here is a list of conditions that involve dementia in children. (I'm working on future blog post about childhood dementia and the childhood diseases that can potentially lead to dementia.)
Does anyone know if there have been other cases of Alzheimer's, itself, among young people? The article on Isobel was just released this weekend, so I will be watching this one to see what other stories develop. Hopefully doctors will continue to try new treatments and figure out how to slow her degenerative symptoms.
This story just reminds me how intricate our brains are and how far we still have to go in understanding Alzheimer's. And though it is extremely tragic to imagine a child losing their life at all (slowly, over time or more quickly) these are the sort of cases that, I think, help raise awareness for illnesses. With these sort of news stories, we are reminded that there is still a lot to learn about our brains, how they age, and how they adapt to both genetic factors and environmental influences.
What are your thoughts? Have you been affected by early onset Alzheimer's as a caregiver or patient? What do you think we, as health activists, can do to bring awareness to this disease and other types of dementia?
Join the Alzheimer's Group
Learn more about Alzheimer's here
Check out my post on the WEGO Health blog about a few of the latest Alzheimer's studies
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Comment by Chris Hempel on September 23, 2009 at 2:29pm -
Hi Amanda:
Thanks for writing about Isobel -- we need to get the word out about dementia in children. My identical twins, Addi and Cassi, are five and suffer from Niemann Pick Type C that is often referred to as the "Childhood Alzheimer's". They exhibit many of the same symptoms as Isobel -- their problem involves the inability to process cholesterol which leads to all kinds brain problems and dementia.
We need more scientists studying kids like Isobel and Addi and Cassi as they hold the keys to understanding dementia for millions of people.
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