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Juliet’s Story (Vascular Compressions, Hypermobility Spectrum Disorder)

Juliette's Story (Vascular Compressions, Hypermobility Spectrum Disorder) Hi, I’m Juliet. I’m 26-years-old, and I’m from the UK.

I’ve been ill with varying degrees of illness since I was born. However, in the last five years, my conditions have worsened.

I have fought tooth and nail for diagnoses which are: vascular compression syndromes (nutcracker, SMAS, & May Thurner) as well as chronic Lyme disease, inflammatory bowel disease, dysautonomia, & hypermobility spectrum disorder among many secondary issues.

These disorders manifest in a neurological way and as a myopathy/ganglionopathy. My ability to swallow, manage toilet needs, move, and sleep have all been altered significantly. Pain, nausea, vomiting, bleeding, dizziness, blackouts, cognitive decline, constant fatigue, heaviness in limbs, excessive sweating, palpitations, and hormonal disturbances are just some of the  symptoms I experience.

Last year, I was wheelchair bound. I was unable to feel my limbs due to being a dangerously low 30kG. This year, I am 40kG (though still extremely malnourished & underweight) through specialist intervention and God’s grace!

There are limited options and resources to manage my conditions, and those options pose many risks. I’m still investigating surgery and other modes of treatment. The prognosis isn’t great in that life expectancy is reduced, but I hope I may be able to start a family, travel, and have a successful career.

I enjoy illustration, crafting, reading, writing, music, and I vlog regularly to create awareness. I wish to leave this place with the knowledge I have played my part in helping humanity in some way.

For more on my journey and creative outlets, check out my social platforms listed below.

Personal Instagram

Instagram on Chronic Illness

YouTube

Art

Juliet
England
Submitted 11-01-2018

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

2 comments

  1. Thank you for sharing your story with others. Blessings to you!

  2. Amazing blog Juliet! So nice that you’ve shared your story with us. You are so strong and keeping you in my prayers. God bless x

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