As most of you know, my family went through one of the most devastating things we have ever been through. On April 8th 2025 , my husband Brian was diagnosed with a Prion disease called Creutzfeldt Jakob Disease .
Months prior to his diagnosis, Brian had not been himself. Seemingly paranoid, forgetful, he was having trouble with his eyesight, and other things that just didnt seem right.
Brian had to go through a lot of testing. The last was a spinal tap. This is the only way to diagnose this disease. Our Neurologist , I do believe had an idea of what might be going on, but could not say. He had asked us to go to a big city hospital as that is where they could get us some answers.
We went through the ER at UPENN, and he was admitted and more testing was done, along with another Spinal tap. Four days later the Doctors came in to talk to us. They said they were 85% sure that Brian had something called CJD. They tried to explain, but it was hard to understand. They then explained to us that they cannot be 100% sure until after death. We could not believe what we were hearing. They then proceeded to tell us that there is NO TREATMENT NO CURE. Brian has 6 to 12 months to live.
How Is This Possible!
We were all in shock and had no idea of what to do next. We brought Brian home. I was in complete denial. I stopped working to take care of him. At first I really thought they misdiagnosed him. He ate well, he tried to keep busy. But then he started to fail so fast, But I was determined! He was getting all the therapy I could get for him. I was making sure he was up every day, went outside often, eating well. I was trying to do everything right.Things got harder, and almost 5 months to the day that Brian was diagnosed, He passed away.
September 10th 2026 will be 1 year that he is gone.
This disease hit our family so hard. Weeks after his death, my daughter had seen there was a walk for CJD. I felt it was way to soon to get involved in anything like this. She was persistant and I didnt want her to go alone. So we went and it was probably one of the best things we could have done. We met so many wonderful people that had been through this. Just talking and learning about such a rare disease and realizing we were not the only ones.
Unfortunately , There is not enough research for CJD, because it is so rare.
We have since went to Washington DC for CJD Advocacy Day to speak with our Senators and explain why we need more funding for research.
We also just went to Chicago for a CJD Family Conference. Learning about what this disease is , and meeting with the top Doctors that are working so very hard to find the answers that they need. How the research is beginning to show some positive signs, getting closer to clinical trials, hopefully soon. And also to meet with other families that are now are our friends.
I never thought our family would become so involved in something like this. But its seems that putting this energy towards something close to our hearts might just help us heal. And help so many other people going through this.
So this year we are doing another walk, to be able to help fund more research. So that maybe someday families wont have to go through what my family and many other families of losing our loved ones, young and old . It would be so appreciated if any donations could be made to the CJD Foundation.
Thankyou so much and for taking the time to read this.
All Our Love, The Pawlowski Family
