Hi everyone!
Welcome to The Joyful Dazzle!
We’re so excited to launch The Joyful Dazzle and have a place to share our stories with you as we continue our journeys with Paraganglioma (a very rare disease).
I’m Jenn (if you don’t know already) and I was diagnosed with Metastatic Paraganglioma Cancer (stage IV) in February of this year.
I had ear and neck paraganglioma starting in 2005, but it wasn’t until 2020 that I understood it could spread throughout the body, so I started learning more and began scheduling tests to be sure I was clear!
Two days before my 35th birthday, I was shocked to find out that I was not clear.
I have about 13 other tumors currently spread out between my liver, my bones, and my lymph nodes. (And 5 treated between 2005-2012 in my ear and neck).
I started this blog as a way to share my journey more easily with friends and family, but it quickly evolved with the goal of bringing awareness and inspiration for others with rare diseases.
After I found my cancer, my family was notified of the urgency to take a look at their own health status as well.
My two older sisters have neck paraganglioma and my younger sister has no instance of paraganglioma, but we’ve all now tested positive for having the SDHD gene mutation (that causes Paraganglioma), so all four of us need to monitor for the rest of our lives.
I’ll have some future posts where I go more into details of my journey over the years and attempt to give a better understanding of paraganglioma and what we know so far as to what it means to have Metastatic Cancer, but this is the brief intro to all of our stories.
Each one of us has a unique story and journey with Paraganglioma, that’s why I decided to bring my sisters with me on this blog and let them speak alongside me in their own voices.
I hope you enjoy it! My blog is a little more day-to-day feelings as of right now, and I have a lot more handwritten entries to add.
There is A LOT more to come! My journey with cancer only started 5 months ago and I am hoping for a long time to share my story! Thank you for joining me and giving me support and love!
All the best to you and your family!
Jenn