Answers for Action and Healing

Answers for Action and Healing

From Scarlit-Rose Ashcraft

Hoping to raise some funds for a consult/assessment & some testing from a private clinic near me, w/Drs who understand affects of my rare disease (EDS.) Covid impacted my access to care & I really need answers/direction.

Scarlit-Rose Ashcraft

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Update #1

9 months ago

Thank you very much to the one person who donated on here, as well as the 2 lovely people who donated to me privately. I've actually reached my goal because some who cared, especially a concerned close friend who gets it but who prefers to remain anonymous, helped me to do what I need to right now, to turn things around and regain some control with proper answers. There's nothing worse than not being in the know, and I am too unwell to afford any more 'guessing games' at this stage - but when you are rare, this is the constant stuff you experience in the public system..

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Synopsis and new goal:

I'm Scarlit-Rose Ashcraft, and I'm called Rose or Rosie by family and friends. I'm a 35 year old independent music artist , writer , advocate , mom of two amazing guys. In the past 6 years I've been fighting a very difficult and painful battle with the unusual genetic disease, Ehlers-Danlos Syndrome or 'EDS' which can affect many body systems. After years of struggling to be believed and treated very badly in the medical system (in part because I am autistic and was misunderstood) my condition was finally proven 100 percent and accepted by the medical system - but then Covid impacted and crushed my hopes to finally get some much-needed rare disease care going on time. So I've really been struggling and fighting hard to stay afloat. I'm hoping to engage with a local private integrative clinic which has experience in these kinds of conditions, for some pretty urgently needed direction and answers. I'm now a full time single parent to my older son who is autistic, and part time to my younger son. 

My older son is doing so much better living with me and now attending his new school which he likes. I especially need to stay well enough, for him. He can't afford to lose what he's/we've built.

On my 35th Birthday, I launched a birthday themed fundraiser (and also released a poetry book) on go fund me, in hopes of trying to raise funds to cover costs for private integrative medical treatment. Originally I had put this on a different fundraising platform and set the goal at 4000 dollars and the theme was my birthday. I was hoping for extended therapies for chronic pain. But I decided to take it down, reduce the goal to just for the consultation and test/s, and try something else. I've moved the fundraiser to somewhere which I think might have better and more trustworthy visibility, and taken the goal down to just 1500.00 dollars while also emphasizing that I offer gifts such as music and books in return (depending on donation level.) 

I did get a smaller amount of private donations from a couple family members and my friend Kate (thank you Kate) for my birthday, and I have a little saved from my tax return after having to pay most of it to an uncovered dental bill. I will be able to initiate a consultation appointment and assessment with that, but I am hoping to raise a little more for testing the doctor decides to do.

I didn't use the facebook fundraiser directly, because it does'nt allow a fundraiser to offer gifts/products to the donors - and being able to give back is something very important to me. I was hoping the word could spread to a larger audience especially. However, few seemed to notice and I was left to wonder whether people were seeing it, or there was something wrong with what I said etc.. it was all really hard on me emotionally, after. I'd like to emphasize that I don't like having to do this. It's really hard and I wish I didn't feel I have to. More than anything, I just want to *actually earn money* via my music and work. I'll keep trying to.

I'm low income and on disability. Due to my financial limitations, recovery was always limited to 'just survival.' I've been unable to pay out of pocket for the ideal professional help and therapies for my condition. I've really suffered as a result. 

Before covid hit, I had some hope since my condition has now been, after years of agony, proven and accepted by the public medical system. But, the pandemic overloaded the system and affected what I thought might have finally been some access to complex condition care. It's been very frustrating and in fact crushing. These past 6 months have been hard on me as I continue to experience symptoms that are debilitating, sometimes personal and difficult to talk about, and deeply concerning to me. I do have enough knowledge to know that there are so many things which could be causing these disturbing symptoms, some which might be serious. I can't just guess anymore and play around with this and that supplement, which could be harmful. I need answers.

I also have unstable discs in my neck and have been on a two year waitlist to see a Neurosurgeon. If my body isn't too well I won't be in very good or safe shape to undergo a risky neurosurgery.  I've been trying my best to stay afloat and have suffered mostly in silence, both physically and emotionally. In spite of it I fought to get and stay on my feet and keep trying to be productive as best I can. 

EDS - though more unusual and mostly invisible - can be *just* as nasty as illnesses like MS and Lupus - especially for those who are more severely affected. Unfortunately in these past few years I have come to fall into that category. I've battled the health affects of this mostly invisible but painful and brutal condition for years, practically all on my own. I survived some really bad flares - especially during the time before I was formally diagnosed and doctors were not supporting or believing me. Those flares were damaging (not to mention traumatic.) I've also tried to rise above and cope with the emotional and life-impacting affects on me by continuing to make art, advocate, write etc..

Even though some people have appreciated and have enjoyed my work (which makes me happy and grateful) visibility and getting out there on the net as an independent artist and writer has been really tough. Like I said, I continue to learn and try, and your support and help is always appreciated.

If you're unable to make a donation via go fundly, and prefer an alternate method, please see the Support/Donate

page on my website, for that info.)

- Rosie

http://www.dreamerqueen.live

Background Information - For those interested (linked)

About EDS (2 paragraphs)

What I went through in the medical system (2 paragraphs)

Situation today (4 paragraphs)

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Scarlit-Rose Ashcraft posted a new update:
9 months ago

Update #1

Thank you very much to the one person who donated on here, as well as the 2 lovely people who donated to me privately. I've actually reached my goal because some who cared, especially a concerned close friend who gets it but who prefers to remain anonymous, helped me to do what I need to right now, to turn things around and regain some control with proper answers. There's nothing worse than not being in the know, and I am too unwell to afford any more 'guessing games' at this stage - but when you are rare, this is the constant stuff you experience in the public system..

Scarlit-Rose Ashcraft commented on a blog post:
9 months ago
I will be closing the fundraiser

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