Thank you for clicking the link to learn more about my sister Kristy and the awful circumstances she is living with, please watch the video to witness for yourself the devastating nature of her disease.

For those of you who don’t know Kristy, she is 43 years young and lives in Victoria with 3 of her children - 2 of which are still “dependents” and in primary & secondary school (2 are adults).

Kristy is a single Mother who bravely left a 20 year long abusive relationship 5 years ago to create a better life and future for her younger children.

Not long after this liberation of suffering, Kristy began a new life of suffering when she became unwell with an unimaginable and hideous disease called “Idiopathic Subglottic Stenosis” - iSGS.

Idiopathic - no known cause

Subglottic - in the trachea (wind pipe) just beneath the vocal cords

Stenosis - abnormal thickening & narrowing

It is a rare, recurrent and devastating fibroinflammatory disease causing upper airway narrowing and severe breathing difficulties, predominantly in women aged 30-50. It is a horrible and incurable disease that medical professionals describe as being “strangled from the inside.”

Sadly there is no cure, only recurrent surgical management.

When Kristy was eventually diagnosed with iSGS, her wind pipe was a shocking 85% narrowed - meaning her airway was only opening at 15% of its capacity! Imagine if you were under water using a snorkel to breathe and were suddenly given a drinking straw instead - terrifying, right? This is Kristy’s life now, 24 hours a day, 7 days a week.

RELENTLESS.

The treatment options available in Australia are: ballooning of the trachea or surgical removal of the chronic inflamed fibrotic scar tissue. The cruel problem with this disease is that the fibrotic tissue quickly regrows and requires a lifetime of surgeries moving forward. In between the surgeries, the airway starts narrowing again, until it is so constricted and unbearable that the surgery needs to be done. If you can imagine being strangled every minute or every day & night - this is her existence. Kristy’s fibrosis (thickening) regrows rapidly and she may eventually be forced to have a tracheostomy (breathing tube inserted into the throat) to stay alive.

In Kristy’s case, she is averaging a surgery every 6-9 months but sadly tries to push it out as long as possible as it means taking several weeks of now unpaid leave from her part time job and this is something she simply cannot afford to do being the sole provider for her younger children.

Even more devastating is that during her most recent surgery, something went wrong which resulted in the permanent paralysis of one of her vocal cords, rendering her breathing difficulties even worse - if you watch the video you can hear for yourself but if not, think of Darth Vader from Star Wars and that is pleasant compared to how her breathing sounds. This vocal cord paralysis also significantly impacts her speech, eating and swallowing even further.

Kristy is so unwell right now that she is facing imminent surgery again in the coming weeks. Simple tasks we take for granted, like walking more than 20 meters, making the bed, sweeping the floor, getting groceries, and general activities of daily living are labour intensive and exhausting for Kristy as she struggles to get enough oxygen. Not only is she a Mum to 2 school aged children, she has to bring home an income as well and has had to significantly reduce her working hours due to the stress it puts her body under.

After years of working in her role at a supermarket which is exhausting and debilitating with her condition, Kristy has made the difficult decision to apply for a disability pension from Centrelink. Due to the current pandemic, this process, which usually takes 3 months to assess, has almost doubled that time and still no outcome has been received, forcing her to remain at work to provide for her family. Living on a disability pension is no-one’s dream in life but this has become her only foreseeable option moving forward.

This is truly the most devastating and heartbreaking disease which affects every aspect of her existence that she will now struggle with for the rest of her life at a time where she should be enjoying her beautiful children and newfound freedom.

As Kristy’s 6th surgery is imminent, I would love to be able to raise some much needed financial support for her so she can at least focus on her wellness and not stress about paying her mortgage and bills or returning to work before she recovers (if she returns at all) as stress is well known to exacerbate this disease. It would also be my hope to raise funds to help her ease into living on the meagre income the disability pension provides when it is finally approved.

I understand that these are exceptionally difficult times for many people so I sincerely thank you for any contribution and/or sharing of this campaign to help a good person in a dire situation.

Best wishes,

Rani (Kristy’s sister)