The Joyful Dazzle is a community for sharing hope, joy, and strength while battling the mental, emotional, physical, and spiritual challenges of paraganglioma and other rare cancers.

One Rare Disease – 4 Sisters

This blog features four very different perspectives and stories about a rare disease affecting the daily journeys of four sisters.

By joining The Joyful Dazzle you will:

hear our personal stories and connect with our journeys
get an insider view of what it’s like to live with a rare disease (and rare cancer)
connect with others who need prayer and hope
lend support to those affected by Paraganglioma

What is a dazzle?

A group of zebras is called a dazzle.

The zebra is the symbol of rare diseases. Just as the zebras’ stripes are unique, so are our rare diseases.

The Joyful Dazzle is starting with 4 sisters sharing their stories and desires to grow into a large community of hope.

Join The Joyful Dazzle

What is paraganglioma?

[Defined from Mayo Clinic]

A paraganglioma is an abnormal growth of cells that forms from a specific type of nerve cell (chromaffin) that’s found throughout the body.

Paragangliomas are usually noncancerous (benign). But some paragangliomas can become cancerous (malignant) and spread (metastasize) to other parts of the body.

Paraganglioma cells commonly secrete hormones known as catecholamines or adrenaline, which is the fight-or-flight hormone. This can cause episodes of high blood pressure, a rapid heartbeat, sweating, headache and tremors.

What is SDHD?

[Sourced from Cancer Genetics]

SDHD (succinate dehydrogenase complex subunit D) is a gene that encodes a member of complex II of the respiratory chain, which is responsible for the oxidation of succinate.

The encoded protein is one of two integral membrane proteins anchoring the complex to the matrix side of the mitochondrial inner membrane.

Mutations in this gene are associated with the formation of tumors, including hereditary paraganglioma.

What is Metastatic Paraganglioma Cancer?

Metastatic Paraganglioma Cancer is when paragangliomas grow outside of the original origin. Jenn had “benign” paraganglioma starting in 2005 in her ear and around her neck. In 2021, new scans below the head and neck area showed many occurrences of paraganglioma in a variety of places including her liver, lymph nodes, bones. This is an example of metastatic paraganglioma because of the spread of the disease.

Hi, I'm Jenn

I am a designer, wife, runner, entrepreneur, and pet-lover.

I first encountered Paraganglioma at age 19 when a “benign” tumor grew through my eardrum and left me with partial hearing loss in my left ear.

In February 2021 (15 years later), I was diagnosed with Metastatic Paraganglioma Cancer (Stage IV). I am currently in “watch and wait” for 15+ additional tumors in my liver, lymph nodes and bones.

January 2022 I was also diagnosed with Papillary Thyroid Cancer and I am currently receiving treatment for that, so I can hopefully soon say one cancer down, one to go.

Jenn's Story

Hi, I'm April

I’m a mom of 2 beautiful girls & a wife to my amazing hubby, David.

I’m a Christ-follower, sarcasm queen, avid theatre fan, trivia game guru & crafty girl poser.

I was diagnosed with carotid paragangliomas in 2013 after having several dizzy spells that eventually escalated to blackouts.

April's Story

Hi, I'm Emily

I am married to my best friend and God has blessed us with 3 amazing girls.

I would consider myself a coffee-holic, home chef, book worm, and dog lover who is self-employed.

Paraganglioma showed up in my life as a reaction to my sisters having it. I went to the doctor preventatively and found a carotid artery tumor in 2016.

Emily's Story

Hi, I'm Katie

Music curriculum specialist by day and crazy cat lady by night.

There is only one thing that I love more than music and cats, Jesus. Ok, friends and family join the tie for second place.

I tested positive for the genetic mutation, SDHD in April of 2021. My sisters have been on this path for several years, but mine is just beginning. Only time will tell what God has planned for me next.

Katie's Story

Get inspired by 4 sisters sharing their journeys living with

a Rare Disease called Paraganglioma