The Dancing Warrior with HD

  As May rolls around, it brings with it Huntington's disease awareness month, a time when I typically flood social media with awareness posts. But this year, I wanted to share something special with you because it's also the month of the annual Huntington’s Disease Society of America (HDSA) convention. For me, one of the most crucial aspects of my journey with HD is the incredible community I've found along the way. I vividly recall the time when I was diagnosed as gene positive at 18 years old and how getting plugged into the HDSA changed everything for me. It was there that I met some of my closest HD brothers and sisters, including my dear friend Bryan Medrano. Bryan and I quickly bonded and became inseparable. We joined forces to help out at events and fundraisers, and I found solace and support within the welcoming embrace of the Northern California chapter. I also found the Johnson family (or maybe they found me), who took me under their wing with boundless love and ...

  Hey guys, I've been debating whether to write this blog because it's still fresh, concluding just in February. But I think it's important to lay it all out for you.  Every year, I have this big annual checkup with my whole squad of Huntington’s disease specialists and neurologists at Kaiser. It's always a bit nerve-wracking because it’s tons of tests, and after four hours, I’m exhausted. The experience is really hard but it’s an important benchmark to track how I’m doing and how the disease is progressing and what medical support I will need for the upcoming year.  This chapter of the story began in Spring/Summer of 2023. It was rough. I dropped weight, got and stayed sick, and couldn't sleep. Sleeping issues are especially unusual for me, I could snooze through anything since I was a kid. My sister-in-law even started voicing concern, wondering if it was my HD or something else. So, in August 2023, I went to my HD specialists, and found that yes, some of it was m...

  The next thing I want to share with you is about my experience with genetic testing. When I was in high school my brother, who is 10 years older than me, was getting married and he wanted to know if he was a carrier for Huntington’s Disease (HD) or not before having children. As we’ve talked about before on this blog, if a parent is positive for HD they have a 50% chance of passing it on to each biological child.  I remember my brother Courtney going through this process with his wife Jamie. He tested negative for HD and in turn he will never have symptoms or pass it on to any children. My brother now has twin boys that are healthy and happy. They just turned 14.  So when I turned 18 I decided that I wanted to be tested. Everyone thought I was too young and many people tried to talk me out of it but I was determined to get the genetic test done. I was a senior in high school when I started my testing process. It is a long process to get through. You are required to go t...

  Hello, welcome back I am Ashley Fajardo and I wanted to share a little of my history. I want to share about my mom, Sandra Lane. She was a beautiful woman who had a smile that could light up any room. She loved to travel and was always very athletic. She had a laugh, that was contagious. She loved her two kids more than anything they were her whole world, my brother Courtney and me.   However, when I was born, she was already beginning to show signs of Huntington’s disease at age __30__. Which is a neurological disorder that causes deterioration in a person’s physical, mental, and emotional abilities usually during their prime working years, and currently there is no cure. Most people start to develop symptoms in their 30’s to 50's. Symptoms usually worsen over the course of 10-25 years and affect the ability to reason, walk, and talk. It is a genetic disorder which means Each parent with a defective gene could pass along either a defective copy or a healthy copy, leaving a ...

Hello my name is Ashley Fajardo, I’m 39 years old (2023), and I have Huntington’s disease (HD). I chose to take the genetic test when I was 18 years old because I wanted to know what to expect for my future. I always knew I wanted to know, to look truth in the face. Huntington’s disease (HD) is genetic and I inherited it from my mom. After I tested positive I immediately joined the Huntington’s Disease Society of America (HDSA) and started volunteering.   I also decided for myself to live life to the fullest.   I really have lived a big, blessed, full life that God has provided.   I was diagnosed symptomatic 8 years ago in 2015. That’s when I really started to search for options that would help me to keep my symptoms dormant for as long as possible. I started changing what I ate. I already was a athlete my entire life so exercising was my happy place. I always loved to try new things and challenge myself. I have been doing CrossFit for 11 years. I enjoy yoga — even hot yo...