I have a rare disease, Ehlers-Danlos Syndrome. I fight for life w/ C-spine instability+other complications because I was misdiagnosed then neglected for too many yrs (article/info below) Raising $ for needed treatment.
Hello, my name is Scarlit-Rose Ashcraft. Friends and family call me Rose or Rosie. I'm a music artist, writer and mom. In spite of barriers, I have accomplished some writing and music goals - like releasing an album and writing some books - all which has been done by will and on borrowed energy and time. I have further goals, hopes and dreams which are very challenging to attain due to my circumstance.
I am diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder which causes weakened collagen. Symptoms can be vaguely compared to more known conditions like MS, Lupus and RA. Ehlers-Danlos, or EDS, causes weakened collagen (your body's 'glue') and is systemic (can affect many body systems.) EDS presents with very soft, sometimes stretchy skin and overly flexible and/or loose joints. But EDS doesn't just affect the joints, it affects many body systems such as the cardiac system, digestive system, immune system, nervous system, urinary system and spinal health.
(See What Is EDS page on my site here)
One of the worst complications of EDS is Neurospinal disease. Areas of the neck and spine can become debilitatingly and dangerously unstable. I am suffering from this as well as other internal issues that need to be addressed so that my neck can possibly respond positively to a treatment and improve. more info below
Synopsis of my circumstances:
This press article on BC Disability here sums it up very well: I was unnecessarily put through hell by my medical system because I have a rare disease. Complications of my disease are now advanced including the fact that I've developed unstable discs C1-C6... due to nearly a decade of neglect. Sadly, I am not the only one with a complex/rare disease who has experienced this!
Although I now have a GP and health team, things are still a challenge as there are lack of resources to treat it here. Even though my problems were worsened by the system, they don't have the resources to full rectify what they contributed to.
I try to move forward living my life, but my time is borrowed and I remain suffering in severe pain and opioid dependent, physically limited, and walking on thin ice ie. in danger of things like stroke, heart attack, sudden death in my sleep, while living with an un-repaired unstable neck as well as things like immune system issues and nutrition deficiencies, which can happen with EDS.
Currently I am raising money for:
A) Follow up testing and assessment in the USA by one of the EDS specializing Neurosurgeons, to see how much more severe I have gotten and communicate this to my doctors here (for care plan)
B) The Regenexx stem cell procedure to improve my neck and buy me time to make a case for surgery, if it is still needed after
C) Expenses related to treatments and higher proficiency testing that is not covered or offered (eg. cellular vitamin deficiency testing etc.) which helps manage other complications that could be making my neck worse (immune issues, nutrition deficiencies, LDI immune system treatment, vitamin injections etc)
D) Surgery if it becomes urgent and/or completely necessary, and my country continues to refuse to provide the Out of Country Care funding (so far they have refused most EDS cases.) *I will have to raise the goal if so
My article (linked above) describes things best, and more information in my own words is available below.
Due to how challenging my health condition has been, I have been on disability and unable to work outside the home for a few years. I work from home. I guess I'm your typical 'starving artist/author' and don't make much or consistent money from my work (as of yet - though I still believe my album has good selling potential, I need to learn how to promote it better, this is slowly improving.)
I struggle to make ends meet for my boys and myself including my health needs. I can barely cover the essentials, and I very much hope to access more treatment which could help me - especially the PICL (Regenexx) stem cell procedure, which would help repair damaged ligaments in my neck. Donations of any amount are always appreciated. I will gift music and/or books in return. :)
Thank you for taking the time to read about my situation, if you have gotten this far. Much appreciated. Please help spread the word.
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