My Quest to Cure Prion Disease — Before It’s Too Late | Sonia Vallabh | TED

the fact that both she and her husband just were like ‘well I guess we gotta go get PhDs and research it ourselves’ is insane

At a glance, this seems like a quest to save herself, but with such a complex disease and so little time, a cure most likely won't be developed in her lifetime. Dedicating the last decade of her life to save people she will never know is heroic.

As a pharmacist this is one of the diseases that truly terrified me when I learned about it. That it can be contagious (mad cow and kuru) or genetic as in Sonia’s case. But also that we have yet to find any way to stop it. Cancer sucks but we’re so much better at treating it now. As we are at a lot of other diseases contagious, sporadic, or genetic. Prion disease is one of the few diseases we have nothing to help it in any way.

As someone currently watching his father be taken away from us by sporadic Creutzfeldt-Jakob disease, this woman is my hero. Help won't come in time for my father, but maybe she will help save others in the future from this horror my family is living through now.

Her humour at 'rumours of my death have been greatly exaggerated' is honestly so admirable. I don't know if I'd be able to make jokes when there's a chance you will die a silent, forgetful death, but her optimism is so infectious and clear. Honestly, good luck to her and the team.

I lost my dad to the sporadic form of this disease. It was hardest experience to witness my dad go through this. This woman is incredible and strong.

We all are racing against a clock we cannot see if you ask me Her disease has only accentuated this reality and catapulted her on a mission to do something stupendous with life I salute her resolve to do something in lieu of living in fear

What really gets me about this is what it must be like to live every day with this hanging over your head. Every bad day, every dizzy spell or headache or lapse of memory you have, you must be wondering - is this it? Learning to live your life and not go crazy constantly looking for signs is no small feat.

What I find so incredible is her willpower to DO SOMETHING about it. I think I'd be broken and sit around wallowing in depression. (I'm not that strong of a person). She has not only fully dedicated herself to becoming the expert in the field (an amazing and admirable thing to do for any person), but is also living her life to the fullest (having kids! safely!). She's just... incredible. Her work is going to save SO many people in the future and she and her husband forged this path on their own. Genuinely one of the most uplifting and inspiring things I've listened to in years

I know two people who have died of prion disease. One was my friends father who had genetic Cruezfeldt-Jakob Disease, he participated in a highly experimental clinical trial, and it extended his life by around 3 years, he ultimately developed COVID-19, and his daughter signed off on a DNR and in one of his moments of lucidity signed a advanced directive, in that he did not want to be put on life support at all. He ended up dying of COVID-19 instead of CJD. Likewise, a person at my local playhouse who I knew due to my work there, developed sporadic CJD, he developed early symptoms in february and was dead by the end of April. It was horrifying to see him slip away in no time. Upon my friends father autopsy, his brain was Swiss cheese and further genetic testing showed the mutation he had was mistranslated, it's why he hung on for so long and died in his 50's. The treatment which was a targeted immune drug, it also had the side effect of damaging his white matter. The trial didn't work, but it gave him some time.

You gave me a quote for life: "we have to heed the call to protect what we can't rebuild." All the best with your research. You're not just working for yourself but all of mankind. Keep at it!

“Real courage is when you know you're licked before you begin, but you begin anyway and see it through no matter what.” ~ Harper Lee. Thank you for sharing your courage with us Sonia.

My grandma died of CJD in October and it was the most horrendously heartbreaking earth shattering thing I couldn’t have even imagined. It was watching her waste away mentally and physically so quick we couldn’t even get an answer while she was still truly there. It was getting a diagnosis that had absolutely zero hope and knowing she was going to suffer until she finally died. It was me being absolutely heartbroken and at the same time glad it was finally over and feeling guilty for having wished she would die already. It was me having to make the decision to go home and say goodbye to her while she was alive (even though she didn’t recognize me) or wait until she died so I could go to her funeral. I chose to tell her goodbye and her last words to me were “You’re leaving!?!” I had a dream about her dying again last night. Prion diseases take the literal life out of people and then force them to live as zombies while their families watch knowing there is zero chance for anything short of suffering for their loved one.

I clicked on TED this am to see what's new... this talk is on the homepage. In one hour I am going to my dad's best friends funeral. He passed from CFJ disease. I had never ever heard of a prion until a week ago. The universe works in mysterious ways that I just watched this. You are an inspiration and I feel deep down that your cure will come soon! Thank you for your work

Living with Nail Patella Syndrome as a diagnosis since I was ten has been so damned hard. I'm 36 now, and my kidneys are showing signs of decline - one of the outcomes the syndrome inflicts on those who carry the genetic error. I could not imagine living with Prion disease hanging over my head. The nightmare that must have been to watch happen to her mother - and knowing her kids could be forced to watch it happen to her. Heartbreaking. My syndrome carries many physical challenges present and future. Very few are aware it even exists - and every person who has it has it a little differently and with great variability. They get diagnosed across the ages - some much later on in life and others very young. It all depends on your particular case. I resonated with this researcher's description of being dealt a bad hand. I struggle everyday with the darkness of depression because the diagnosis hangs over me. It has been easy for friends and online commenters to say, dont let it get you down, just live your life, but its like a guillotine. I struggle to imagine anything good in my life because trying to attain traditional adult goals like renting or buying my own place is so damned impossible. I can't even have that in my life, and I'm always thinking that before long my quality of life will dip further and further and further and what is the point of waiting for that? I only wish rare illnesses got the incredible funding and attention and problem solving energies that military spending and posturing politically gets. I wish people could suffer less and live more and that life wasn't about just getting buy. I wish many things were different. I grieve. Honestly - with every breath I feel like I grieve for the couldve beens, and I although I try so hard to stop its a feeling that has such weight and crushing momentum to it that it seems impossible to pause. I dont believe in God, but I imagine she might. And I hope I'm wrong for her sake and that she gets the divine intervention she needs for a breakthrough. Perhaps it will lead to helping others with different conditions too. A silver bullet for all of our genetic problems. A little dream I have for her. And her kids.

Thr strength she has is utterly incredible, knowing there's a ticking time bomb literally in your head and defying it with all you have.

Beautiful, yet bittersweet TED. She will go down in history. This must be one of my favorite TEDs. She is so humble and I am hoping she can accomplish her dreams 🙏

Speedrunning PhDs in this field is an absolutely crazy achievement in itself, and it was just a means to and end for them. I hope their drive pays off and she gets to combat her own disease

I watched my dad die, slowly, from Alzheimer's disease, which is also caused by misfolded proteins, but there's still debate about whether it should be considered a prion disease or related to prion diseases. I would sign up for gene editing or protein removal TODAY if it meant eliminating or even reducing my risk of Alzheimer's, or it meant some other family wouldn't have to suffer through that brutal disease in the future.

My cousin who was fit and active and living life with gusto was suddenly ill and disappearing. It was CJD. He passed in weeks. His family donated his body to researchers looking for the cure/ prevention. We are still awaiting word if it was acquired prion (mad cow) or genetic. But looking back how my healthy, strong,vibrant grandfather suddenly disappeared into a black hole and was gone in three months, I am prepared. If your loved ones are currently being taken from you by this disease, consider looking into donating remains to research to find a cure. (I believe you have options to donate just the brain if that’s something you’re more comfortable with.) If your loved one was diagnosed with dementia or Alzheimer’s but it’s progressing at an unnatural rapid pace, have them tested for CJD. I have a strong feeling many cases go undiagnosed.