CJD: The Great Mimicker

[myruffin1]

My Dad was diagnosed 2 weeks ago with CJD, our family is in shock and devastated. He is now in hospice with only weeks to live. We need more education in hospitals and for Drs on prion diseases.

[UCSFMemoryandAging]

At the moment, yes. Autopsy is the most definitive as a brain biopsy can have a false negative result if the sample didn't happen to pick up any prions.

[Allibaby78]

The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy?

[returnoftheramble3]

@kypduran they said that they could change the shape of them in a lab. That's what causes them to sponge the brain. It's either that or designing something to kill them

[returnoftheramble3]

I sound stupid, but if they were able to change the shape of prions in a lab then couldn't they create a dominant prion to convert them back to a normal shape and kind'of contain the damage? I know it might get complicated when they have to identify the shape of the person's infected original, but it's probably at least somewhat standard.

[UCSFMemoryandAging]

@returnoftheramble3 People are working on either converting misfolded prions back to the normal prion protein or removing the misfolded prions from the brain tissue. One of the problems is that the misfolded shape is much more stable than the healthy shape, so it is much harder to force it back to that less-stable shape.

[Soneclipseredvblue]

I am really grateful for these videos. I am going to be using them and citing them in my human anatomy class when we talk about diseases that affect the NS. I'm surprised at how big this is yet how little people know about it and that's what I want to get across is that it is a big deal.

[Humbertusmarius]

My father is dying of CJD. First symptoms became visible a couple of weeks before Thanksgiving. At first we thought it was a stroke, then Fronto Temporal Dementia, but finally he was diagnosed with CJD. I hope some day there is a way to cure or prevent such a horrible disease. He was a few months away from retirement. We are losing him about twenty years too soon, and my family will never forget him.

[Drews2006]

@Humbertusmarius I am so sorry. My father died of this disease in June 2005. Story the same, thought it was a stroke, then rapid alzheimer's, etc. Finally a doctor who had seen a case of CJD before told us he thought that is what my dad had. Two weeks later, my dad died. Autospy comfirmed CJD. Very painful time for us, we were in shock! Best of luck to you and your family.

[scrapbuddie]

My mother was diagnosed with CJD in February....and Dr. Geschwind is the doctor I sought out to help us understand CJD and upon e-mailing him, he asked us to come to UCSF the next week. Never have seen a more caring research facility/hospital stay...

[ambera15]

Oh my God , I´m shocked that there are actually so many people suffering from this disease . I thought it was an extremely rare condition ? It´s certainly not going to turn into an epidemic ? To hell with this disease.

[McWheeler93030]

I am glad UCSF is using Youtube and Facebook as a form of advocacy. My father was diagnosed with CJD in June 2002 and fought this disease for five short months.

[brianchristie]

My father-in-law was just diagnosed as having CJD at UCLA hospital last night. It all started with vertigo, followed by dementia and severe mood swings. My family (esp. my wife) is so distraught. He isn't expected to survive for more than 2 more weeks. I wish there was a cure, but according to my research, there isn't one.

[tkdterp8]

My brother died of this disease at age 32 in 2004. I have documentary on my page called CJD Brain Killer which shares his story.

[twin1dad]

My Grandmother died from CJD as well in 2006, they thought she had a stroke, was sent to a rehab facility, sent back to the ER, and died 1 week later. It's a terrible thing to watch someone go through.

[tummaiwa]

My dad has this disease, he had this disease in August 2008 and still alive now. My family and I are giving him the best care.

[tedcoogle]

My mother is dying with this disease.

[kbelait999]

My wife, aged 55,  just died of CJD. 4 weeks from onset to death.

[vican51]

What is your opinion on the book " Brain Trust"?