Giusiana’s costs for medical procedures

Hello, my name is Victoria Hirsch and I have the privilege of being friends with the one most resilient, kind, vibrant, talented, and wonderful people I know, Giusiana. And, as of September, a wife to her husband Daniel. She is also a burgeoning artist.

When Giusiana was fifteen, she tore her abdominal muscles (rectus abdominis) causing severe pain and major pelvic and hip instability. Two years went by with no help, and as a last ditch effort to get care her family flew her to the Vincera Institute in Philadelphia,

PA for an extensive surgical repair.

The cross-country trip was necessary because due to the rarity of the injury and surgery to repair there are very physicians in the US who are qualified to perform this surgery.

Nearly two years post-surgery, she was diagnosed with Ehlers Danlos Syndrome (EDS). Essentially, this means her body cannot produce healthy collagen, which provides the building blocks of our body correctly, even with supplements. This causes us (I too have EDS) to be supremely flexible, prone to joint dislocations just from simple tasks. It puts great strain on our joints, ligaments, tendons, and thus muscles as they overcompensate for our joints, leading to muscle tears. This explained everything! Now it made sense why so simple a task of bathing her dog caused such severe injury.

She has now unfortunately experienced an even worse repeat of these prior injuries with MORE torn muscles and even more severe hip involvement, and she and Daniel need to go back to Dr. Poor at the Vincera Institute to fix this before even more damage is done. Dr. Poor said her case is severe enough he will be bringing on a second surgeon for this to focus on her hips in addition to the core muscles.

Due to the uncommon nature of the injury and the fact that the surgery is not widely known protocol, insurance companies consider the surgery “experimental” despite it being well documented as effective. This means that insurance will have no part in lifting the financial burden. The two surgeries (hip and core repair) are estimated to cost at least $40,000.

They will require a hotel nearby so they can be close to the Institute for follow ups and daily rehabilitation. The minimum projected stay time for Giusiana is two weeks minimum. However, EDS patients often have slower recovery periods, and due to the complexity of her case the ideal stay would be a month so she is local to the specialists who can help her with complications.

Funds will go towards flights and transportation, the surgical and rehab costs, and hotel and food for the duration of their stay.

After getting her EDS diagnosis, Giusiana found an incredible neurologist, who helped dive into some of the more complicated aspects of her health issues that didn’t quite fit with only EDS. After extensive testing, she suggested she has Andersen-Tawil Syndrome, ATS.

(Read about this disease that effects less than a few people in several million here: https://rarediseases.org/rare-diseases/andersen-tawil-syndrome/. )

After contacting Dr. Rabi Tawil (the world expert on this condition), who looked over Giusiana’s medical history and agreed with that diagnosis, they began looking for a doctor to help her get the final test to confirm the diagnosis.

The test she needs is also considered “experimental" by insurance companies, it’s called a CMAP. There are no specialists within the state who can do this test for her, or even take her on as a patient for regular management of the disease, so she would be required to fly across the country AGAIN, either to California or to Dr. Tawil’s hospital in NYC.

The official ATS diagnosis is crucial to her receiving proper medical care and daily accommodations. Any leftover funds from the surgery will go towards helping her meet this goal.

Giusiana told me she would like to thank anyone who helps out, and is offering a sticker of her own original artwork, shipped to you at no cost.

here’s a note from her:

As many of you know by my story and my work, I struggle with multiple health conditions that impact my daily life. Due to these conditions I am currently facing some significant upcoming medical costs.

So, I've decided to offer a sale on my art!

Until I meet my goal and can pay for my surgeries, I'm offering some big discounts on my artwork.

Every single purchase's profit will be going directly to pay for my medical expenses. I will have a discount code and be posting to my social medias multiple times weekly with specials! Www.Giusiana.art

❤️Stickers for Donors!❤️

To say thank you, anyone who donates to my GoFundMe and lets me know, will receive any in-stock sticker of their choice and a handwritten thank you note. These stickers can be shipped anywhere in the world at no cost to you ❤️

Get Your Sticker:

1. Visit my GoFundMe page

2. Make a donation and capture a screenshot of confirmation (please do not share donation amount❤️)

3. Share the screenshot with me via any of my social medias, my website www.Giusiana.art , or at [email redacted] . Include your mailing address and preferred sticker choice and you’ll get your thank you within two weeks!

Your support through the last two years has been immeasurable. I have met some truly wonderful people, and you all have encouraged me more than you know.