top of page

Jazz and her Incredible Journey

Hi there! I’m Jazz, 25 from the United Kingdom.

I am super excited that Taryn and Jess asked me to write a blog post about my medical life, disability and how I have thrived over the past 25 years.

I write ‘thrived’ as it is a miracle (to me) that my body has endured so much in a short life span and I am here to tell the journey to where I am today. As you read on, you may be wondering ‘how does Jazz remember so much?"; Well, I asked my mom to contribute to the earlier stages of my life, so here we go.

Some facts about my diagnosis: I was born with Cystic Hygroma, a rare condition which affects 1 in 6,000 live births. Due to it being a rare condition, these numbers are calculated by incidence or prevalence rate. There is no official method for tracking these conditions and no official statistics exist, only estimates. My cystic hygroma is located in the head and neck and involves fluid-filled sacs that results from a blockage in the lymphatic system.

They are most commonly located in the neck or head area, but can be located anywhere in the body. Cystic Hygroma can be discovered in a fetus during a pregnancy ultrasound, or it may be apparent at birth as a soft bulge under the skin. When it is identified on pregnancy ultrasound, there is an increased risk for miscarriage. Cystic hygroma may be caused by genetic or environmental factors that cause abnormal development of the lymphatic vascular system during embryonic growth.