Rosie medina - Medical bills fundraiser
:Stuck between a rock and a hard place
Im kindly asking for your help
SUMMARY:
I live with a genetic connective joint & tissue disorder called ehlers danlos syndrome and some of the commodities i am diagnosed with from it are extremely rare, incurable and can be life threatening which requires my level of care no longer being able to fit into the public system, needing to go private to see the highest doctors for the chances of treatment, opportunities, scans and further outcomes.
I require a vast team of specialists including gastroenterology, cardiovascular, neurosurgeons, rheumatology, orthopaedic surgeons, orthotist & prosthetics team, physiotherapists & rehabilitation pain medicine just to name a few.
These senior doctors from all over Australia in our public system have not been able to offer me any more hope leaving me with no option to opt for private care, which I've had to do before but not on this calibre. Each appointment can costs up to $500 just for a consult and i need genetic testing amongst much more.
My list of diagnosis include:
Hypermobile Ehlers-Danlos Syndrome
Cyclical vomiting syndrome
Dystonia
Postural orthostatic tachycardia syndrome
(POTs)
Rheumatoid arthritis
Thoracic syrinx
(syringomyelia)
Bilateral calf shortening
Peroneal palsy, nerve damage, drop foot
Chilblains
Raynaud's phenomenon
Erythromelalgia
And im currently needing to or being investigated for:
Neurology for Chairi malformation & Craniocervical instability
-needing upright brain scans with a possibility of brain surgery
(Suboccipital craniectomy)
ENT Dysphagia (swallowing issues) & deviated septum
Issues from dislocations majorly nerve pain, rotator cuff injury.
I have scans end of sept.
More rheumatology in october, private with referalls to neurology & gastroenterology.
Gastroenterology for endoscopy relating to gastroperesis
Possible renal for Kidney issues
Immunologist for MCAS
Gyno for Bowels/uterus
Cardiology for heart again & more.
Over the span of 13 years i have been through thousands of scans, imaging, serial casting for over 1 year, had to wear moon boots, straussberg socks, try medications, nerve conductions, biopsies , see hundreds of specialists , blood panels, strict regimes, holter monitors, dental extractions, being pushed around in wheelchairs attached to machines, had to learn to walk again over 20 times, i had to Self-fund disability aids such as walker, forearm crutches, and cane and so much more.
OUTCOMES & CONCERNS:
Orthopaedic Surgical intervention and treatments like botox may no longer be viable due to HEDS and it stemming neurologically.
There has been a consistent failure to provide appropriate duty of care, with a lack of clarity, communication, and timely referrals over an extended period.
Discharges from services were made without ensuring ongoing support or adequate treatment plans.
There is a notable neglect in understanding my condition, resulting in inadequate treatment and missed opportunities for intervention.
I have been advised by these doctors i pursue private care, by all teams, including my GP even with the understanding im low income being unemployed and still not recieving disability benefits.
My repeated attempts to seek proper treatment have been hindered by systemic shortcomings.
I can no longer rely solely on my GP to navigate this process and it has effected my quality of life, i am reaching out to you in hopes this life changing funding will get me out of a hospital bed and able to enjoy my life once again.
WHY WHITHIN 6 MONTHS?
With my health rapidly deteriorating this is important i try not to extend my time frame too much.
WHY 10K?
My scans on average:
Yearly MRI full spinal $380
Endoscopy just over $1000
Upright cervical/brain MRI $500
Ambulance cover $61.50 yearly
My appointments anywhere from $300 - $800
A lot of these do include pensioner rebates but some do not and i need the money upfront to be accepted.
2 years of private health insurance would change my life dramatically and solve many of these issues i encounter, I've calculated that alone at yearly price of
$4,596.56 through HIF. The cheapest insurance i could find.
How much is genetic testing?
several hundred dollars for specific tests, up to over $1,200 for private diagnostic testing with counselling, and potentially more for complex or multi-family testing which is what i need.