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| What’s CJD and how does it occur ? | My experience with an incurable disease |

It was all normal till November 8, 2022 till my dad boarded Chicago flight from Abu Dhabi to visit my brother in Austin along with my mother.

Flight was about to land in Chicago O'Hare in 30 minutes and all of a sudden he lost his geo-location sense and had a sense of fear.

My mom was all alone with him, somehow they managed to get off Chicago flight but they were not allowed to board Austin flight due to aggressive & panicky behaviour of dad.

No one knows what's happening at that instance.

It gives me goosebumps when I imagine what my mom had to go through during that 12 hours. Fortunately they were already in US which allowed my brother to pick them up from Chicago.

Over a period of next few weeks he totally stopped conversations , no appetite , he was lost in his own world.

Few days later he was admitted at St. David's Round Rock Medical Center where every possible test was performed and everything turned out negative.

They had to extract his cerebrospinal fluid for examination which was sent to Mayo Clinic.

After few days at hospital he was discharged and based on doctors suggestion we decided to bring him back to India safely.

December 26,2022 we took him to KIMS, Hyderabad for further examinations as we still didn't know the exact cause as we were waiting for results from Mayo Clinic,Cleaveland. Upon careful examination and few MRI scans, it was revealed that he had CJD (Creutzfeldt-Jakob Disease).

This was something new to us. Doctors stated that he might have 6 months at hand but he was hardly alive for 40 days.

CJD is a rare disease, one in a million gets this and in a million CJD patients , dad's condition was rarest as it was rapidly progressive.

The reason I wanted to share this with you all is to bring awareness of CJD, it can happen all of a sudden and we won't even know the changes are occurring in our brain.

Early hours of February 1, 2023 dad passed away peacefully with everyone of his family around him.

Let's understand CJD in-depth and why does it occur.

What's CJD

CJD stands for Creutzfeldt-Jakob Disease. It is a rare and degenerative brain disorder that belongs to a group of diseases called prion diseases. Prions are abnormal proteins that can cause normal proteins in the brain to become misfolded, leading to the accumulation of damaged tissue. CJD affects a person's cognitive abilities, causing rapid mental deterioration, memory loss, personality changes, and difficulties with movement. It is a progressive and ultimately fatal condition.

Why does it occur?

Creutzfeldt-Jakob Disease (CJD) occurs due to the misfolding and accumulation of a specific protein called prion protein. The exact cause of this misfolding is not fully understood, but it is believed to be associated with spontaneous changes in the structure of the protein. In some cases, CJD can be inherited through mutations in the PRNP gene, which provides instructions for making the prion protein.

Additionally, CJD can also be acquired through exposure to infected brain or nervous tissue, typically through medical procedures or contaminated surgical instruments. However, such cases are extremely rare.

Overall, the underlying mechanisms and triggers for prion misfolding and the development of CJD are still an active area of research, and scientists continue to investigate these aspects in order to better understand and manage this complex disease.

I am forever indebted to my uncle Dr Naresh Vadlamani. who was always there for us till the end to make right decisions and guided us appropriately.

Columbus hospitals was his home for few days , thanks to all its staff who helped us in crisis.

!!!! Bala Sista , Kiran Nukala , Divya. & Vaishnavi thank you !!!!

!!! You'll be missed dad , your always with us !!!

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