CJD, a personal story

[TSEPRION]

Monday, January 2, 2012

EFSA Minutes of the 6th Meeting of the EFSA Scientific Network on BSE-TSE Brussels, 29-30 November 2011

transmissiblespongiformencepha­lopathy.blogspot.com/2012/01/e­fsa-minutes-of-6th-meeting-of-­efsa.html

Friday, December 23, 2011

Oral Transmission of L-type Bovine Spongiform Encephalopathy in Primate Model

Volume 18, Number 1—January 2012 Dispatch

transmissiblespongiformencepha­lopathy.blogspot.com/2011/12/o­ral-transmission-of-l-type-bov­ine.html

[zuniga6412]

My heart goes out to you.

[hitcan79]

wow I didn't realise there were more than one person commenting here that has lost a family member to this disease, instead of saying it to every individual this is better... Sorry for all of your losses, It must have been so hard to go through.

[cyty08]

Also it is not necessarily genetic, my mums autopsy showed she did not carry the faulty gene, so myself and siblings do not need tested, How do you catch Cancer....you dont, its just one of those things...If you think you know someone with this horrifc disease please push the doctors to get an EEG, or a lumbar puncture, sometimes the only way for diagnosis.

[hitcan79]

@cyty08 sorry for your loss, and sorry for the pain your mum, you and your whole family must have went through, and no doubt still going through...

[cyty08]

This is a horrific disease, my mam died 14th Nov 2010, such a horrible thing to watch her go through, she fell ill in September and died less than 2 month later, I think there is not enough known about this disease, not that there is any cure, but we struggled to get a diagnosis. dementia, water infection, alzhimers the list goes on, people need to be educated, sporadic CJD is not contagious, it is not caught by eating beef, it is a one in a million chance you will contract it.

[issy522]

Thank you for sharing this beatiful video and your story.How courageous of you!. CJD is a horrible disease, and one who has not seen the last stages of it cannot possibly imagine the absolute hell that all involved go through with it. Your video was very uplifting, I loved the music, I loved the way that you told your tale. You have uplifted my sad and aching heart. My only sibling, my dear, sweet sister died from the sporadic form of cjd in May. My heart goes out to you and your family.

[hitcan79]

@issy522 Sorry for you loss, and everything your sister went through, wow, I can't even imagine, she no longer suffers.

[SisterSunshineTV]

This disease is TERRIFYING! 

[JackHoang14]

it's been almost 2 years, and not a day has passed by that i haven't thought of my grandma who died from CJD. i miss her so much and wish she was here with me. I hope there is a care for this soon as I hope that people do not have to suffer from this disease, RIP SAM MUI LY. you'll be missed.

[hitcan79]

@JackHoang14 Sorry for your loss to this horrible disease.... I hope the same you do.

[thegeekproductions]

Really quick comment, this is not VCJD, it has nothing to do with meat.

[ilnvrtl]

my aunt (who was like my mom) died of this recently, and her mother died of it a few years before. she has two young sons who now struggle with the though of carrying the gene. this disease is horrible and i wish nothing like it upon my worst enemy. thank you for sharing and my heart goes out to those who have lost or are fighting the fight. stay strong.

[hitcan79]

@ilnvrtl sorry for your losses, I hope the two sons are ok.

[texasjazzyapple]

Steve, I'm so touched that you are so generous & brave to share this story. It has been done amazingly tastefully, my heart goes out to you. My husband has Alzheimers/Parkinsons so I share your emotions.

[bigbadbruins1]

My mom died of CJD.

[teresaj336]

@bigbadbruins1 I know this is a year late, but please take a look at the video I just posted on my feed. If you would like to include your story please let me know and share share share! Together we can raise awareness!! BTW, are you in Beantown by any chance?

[MisoMichelle]

I am so sorry for your loss. The video is tastefully and beautifully done. Thank you for sharing your story.

[missymarine18]

My father died in 1999 after being diagnosed with CJD. CJD is a hellish disease I wouldn't wish on my worst enemy. My heart goes out to everyone affected by Creutzfeldt-Jakobs Disease.

[pocserp]

Thanks to all who have posted comments on this video. I am sorry for those who are suffering, with their loved ones, with this relentlessly progressive and universally fatal disease. I highly recommend the CJD Foundation as a resource to help support those who are dealing with CJD. For the record: Bonnie's case was proven to be sporadic - no identifiable cause. It had nothing to do with beef or deer. The best answer I've come up with about her death is its "God's will".

[reannan1462]

I am sorry for your loss.... I also work in healthcare, and I have to ask you this because I am sure you have thought a lot about it yourself.... do you have any idea how Bonnie contracted CJD?

[ihatefitpro]

@reannan1462 There's no way you can catch it. It's inherited like Alzeimers or Parkinsons. You're confusing it with vCJD which is from meat. Totally different.

[gator077]

@ihatefitpro CJD is a disease caused by prions which are abnormally folded proteins that cause a chain reaction and cause other proteins to misfold. Some transmission is possible through transplants, contaminated surgical instruments and injection of growth hormones from infected pituitary glands. What causes the initial prion misfolds is still a mystery.

[supmaker]

My brother in-law was just confirmed on 2-19-2010 of this disease.First onset of this started on 11-2009.The Dr.'s at Emery University said he has only about 3 months. It is such a terrible thing to witness in person especially when it is a loved one.I am sorry for your loss and for the loss of the other people that have posted as well.

[reannan1462]

That is interesting... is your brother from Georgia or South Carolina? I live in South Carolina, and know of a few recent cases..... you are in my prayers.

[melcharlie01]

thank you so much, my step mum has just been diagnosed after having symptoms for two months, my heart goes out to my dad x

[6969ok69]

My mom died of this.

[thorwd]

The type of CJD described in this video is not caused by eating tainted beef (as incorrectly referenced in the comment by ambera 15). The vast majority of cases of CJD in the U.S. are random; with the remaining cases being inherited.

[ambera15]

Why is it that so few people know about this disease? After all , there may be a CJD pandemic in a couple of years. We´ve all been eating beef .

[Lynn40213]

Thank you so much for the touching video . I had the honor of taking care of a patient with CJK and it was an emotional as well as a learning experience for me.

[Catholicnerd]

+Memory Eternal+ God bless you for being such a loving husband and for having the courage to make this video.

[McWheeler93030]

My father had CJD. This video did not effect me emotionally until I went to the 2009 CJD Foundation Family conference in D.C.