Life, Dreams & Justice (C-Spine Instability Treatment Fund)

Life, Dreams & Justice (C-Spine Instability Treatment Fund)

From Scarlit-Rose Ashcraft

I'm a mom, music artist & writer with dreams & goals. I'm very affected by complications of Ehlers-Danlos Syndrome with C1-C6 spinal instability. I'm raising $ for treatment to help, which otherwise I can't access.

Scarlit-Rose Ashcraft

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Update #1

about 1 month ago

I really want to thank everyone who has reached out to donate something you could, even in times like these. I have to get started and face this and try. I can now, and it means a lot to know that you guys believe I deserve it. I tried to post something on my FB but nobody could see it :(

More Info

  • Hi folks! Thank you for looking at my fundraiser...Do you have about 7 minutes of time? My situations' difficult and a little complicated, so timed, reading the 'overview goals & story' takes about 7 minutes. If that is too much reading and you prefer audio, I've made the 7 minute video reading it off (excuse the drab expression in it, I was feeling pretty unwell when recording it.) Any donation large or small, and sharing my story/fundraiser- and my content - helps a lot! Thanks

'Life, Dreams & Justice' - Overview goals and story:

I am Scarlit-Rose Ashcraft, known artistically as Scarlit Rose. I live in Victoria, B.C. Canada. I'm a music artist, writer, aspiring model, mom and advocate for neurodiversity, health, disability and more. I'm also heavily affected by the painful genetic condition Ehlers-Danlos Syndrome (EDS)- which causes softer, weaker collagen, and the many complications which come with that. I'm determined to live with some quality of life, quality time with family & friends, reduced pain, and ability to pursue goals & dreams, in spite of having EDS.

EDS is a difficult condition, but there are helpful treatments. Although it's more unknown and rare, EDS can behave in similar ways to more known conditions such as MS or Lupus. (See 'What is EDS?' further below)

Currently, the worst of my struggles is the instability & disc disease in my neck. This puts me in severe chronic pain, fatigue and activity limitations on a daily basis. It's also beginning to cause me serious nerve damage such as neuropathy and loss of feeling in areas on my body. I've been living with this instability for a few years without the ability to access proper treatment. As time goes on it's becoming more and more crucial for me to reach the right help and interventions before it'll be too late. 

Life/barriers:

There are effective treatments for the issues that come with having EDS, which can really improve pain, quality of life, and increase functioning in patients like me. However - and in spite of relentless advocacy efforts (including by the ILC Foundation) - proper treatments for EDS continue to remain excluded from our public healthcare systems' coverage perameters. 

This is especially so as it relates to neurosurgery & neurospinal disease care and prevention. It's a problem in this country, which advocacy efforts are trying to fix. The government is beginning to acknowledge a problem, but unfortunately, the majority of the medical community here (doctors, specialists, surgeons) have been very stubborn. Then, covid further slowed the progress efforts. 

This situation has been incredibly frustrating for EDS patients and their families, and some people have lost their lives. My own life is one I quietly battle for. 

This kind of experience heavily impacts the physical health, because living with these neurospinal complications - without any proper treatments and therapies to help - is very disabling and potentially dangerous. It also impacts the mental health, because it's very painful. In spite of this I continue to fight to be here, to do my music, poetry, writing, art, and advocacy work, and to be here for my sons. I sometimes have dark hours, but I get through them.

My barrier to getting the help I need is that much of the help I need is not accessible here and has to be paid out of pocket for and sometimes travelled to. I'm on disability and parenting two sons one with special needs. I just don't have the extra funds to work with - so I can't afford most of the additional funds required to access consistent proper treatments for my condition. Though I'm an artist and a writer, I only sell my work sporadically. I'm working on trying to improve that! (though promotion is not too easy these days) 

So far, my options have been really limited and I've continued to suffer and gradually get worse - in spite of my home-based efforts.

Raising funds:

I'm raising funds for the chance to attain treatments that have helped improve the states of others like me, but who are in better financial positions than myself. This includes nonsurgical treatments for the neck instability and treatments that help the whole body health and immunity - which stop or slow the mechanisms that cause damage to the spine and ligaments (in EDS that is.) 

Though I've been proposed surgery abroad (out of country) twice, it is incredibly expensive (100,000.00 and above) and fundraising for that amount is unrealistic in times like these. The folks who've been able to attain this surgery abroad, usually for a family member in need, are those who are either quite well off or have had a house to mortgage or sell (which I don't.)

I'm hoping to improve with various nonsurgical treatments which have indeed helped others with similar issues to mine. The hope is that, at the very least, this would help my overall health improve and buy me time until the ILC foundation can hone another EDS-specializing Neurosurgeon available to operate. Unfortunately, there was someone available in 2016, and an unforeseen circumstance caused that to fall through. They are trying again, but currently, there is still no one else ready. 

If I eventually attain the opportunity for surgery and still need it, that's great... but the surgery is still very risky - especially on people with EDS who have more complex problems. The better shape I am in, the safer it will be for me. 

For now, I'm raising funds for treatments to improve my neck and my health because my problems have become quite bad again, and getting better stability and strength is becoming crucial in order to win my battle. In return, I give what I have to offer in the form of music, writing, creativity/art, and education & awareness efforts.

Justice:

For the purposes of awareness, I've opened up and am speaking out about my painful experiences; My experience with having EDS - which is what some doctors describe as "one of the most neglected disorders in the world" often ranking in the top 3 on "most painful chronic conditions" lists - and also - My experience with being a woman misunderstood and mistreated by the medical system, due to being 'inspiciously' autistic. 

This means not 'obviously' autistic, because I have strong language skills as well as learned social skills, but I still socially present a little differently and think differently. Because of this I've been prone to being misjudged and treated poorly. (I was diagnosed with what was formerly known as asperger syndrome but is now simply autism, based on the new DSM.)

Recently, I opened up about the horror story of what I was put through by the medical system from 2013 to 2018, in article written by journalism writer Sebastian Rubino (here.) I'm also currently working an a book about my story, which is really important to me. I've described my experiences in some of my song lyrics and poetry, as well. I feel it's really important to tell my story for awareness, education and a sense of justice, too.

Being different, and challenged, has made me who I am and has made me an advocate - but it's also been really hurtful and injurious along the way. It's part of why I'm in the position I'm in today. I've been very hurt by bullies in society, and the system - medical especially. Although they now seem to better acknowledge and treat me with more decency, I'm stuck living with the trauma and the damage of not being properly diagnosed or helped - and instead being discriminated against and refused care - for way too long. This relates to why my condition got as severe as it did, when it didn't need to. 

I still have hope that, if I can attain the right help, I can at least partially recover from the condition I've come to be in.

 In 2017 I achieved my lifelong goal of releasing a music album - in spite of major barriers - and the feedback has been super positive! Recently, I released an updated & remastered version of the  music album. You can get my music album - as well as books and more - as gifts in return for donating!! Also, if you are unable to donate via the method on this platform, please visit the Support/Donate page on my website for alternate donating options. *For additional information on things read the organized compartments below. Thank you.

*Additional information*

What is EDS? 

Though it's mostly invisible (especially from the perspectives of people who don't know about it) EDS is a condition that can get very severe and debilitating, even fatal. I am profoundly affected by EDS today because of what I went through (re: lack of being believed, accused of 'faking for attention' etc.) It resulted in a huge delays in terms of arriving at the proper diagnosis and properly managing the complications. Unfortunately, I'm not the only one.

The best and more effective treatments to improve complications - and damaged ligaments (such as in my neck) - are only available via private pay. It shouldn't be this way, especially in a place like Canada, but sadly, when it comes to EDS care, it is. 

EDS is a painful and very challenging genetic connective tissue disorder which causes weakened collagen (your body's 'glue.') One is born with it though it's common not to notice until later, when affects and damage start to set in (which is what happened to me.) EDS presents with soft, sometimes stretchy (as in my case) skin and hyper mobile or loose joints.. it causes the joints, skin, the spine, blood vessels/circulation, heart, and internal organs to be more fragile, sensitive and easily injured. This develops into severe pain as well as many other problems and disorders related to the joints, spine, digestive system, immune system, cardiac system and autonomic nervous system. Complications of EDS can be effectively managed with the right treatments, though access to this has been difficult for many EDS patients.

Many people with EDS look mostly 'normal and okay' on the outside, so they are not believed and assumed to be/accused of whining, complaining, exaggerating and even lying about their pain and symptoms. Advocacy efforts are trying to change this for prevention of both physical and emotional damage. Doctors and society alike need to be more EDS aware and compassionate. 

 My Obstacles: 

Currently, I'm affected by various complications of EDS, some of which are more stable with medications, but some of which I have been unable to attain or continue proper treatment for, due to lack of funds.  Other than the music and writing I've created, which only sells sporadically, I'm on disability unable to earn. After caring for and feeding two teen boys and monthly bills/debts there isn't much to work with. 

Problems I am up against especially relates to issues with my immune system, and severe problems with my neck. Note that these immune system issues - which I need effective but private pay LDI treatment for - can impact my neck because they contribute to ligament damage. I have been diagnosed with Atlantoaxial Instability (C1-C2) and additional C3-C6 instability in my neck (scroll to the bottom of this page for verification of facts.) It is very painful, debilitating, life limiting and potentially dangerous. I can only safely turn my head about 1 inch each way. I suffer with severe chronic headaches for in which I have no choice to take (prescribed) painkillers for daily. I'd rather not have to. This is why I'm often seen in neck collars, including the black 'choker like' looking ones which I made myself (to be supportive, but look more fashionable.) Any use of my arms puts pressure in my neck, but I have to use my arms. I tremor, especially my right hand, and I experience neuropathy often. I am in bed often, and have to use walking sticks and my power chair. Every day is a struggle. Some days are a little better, some days are terrible. 

Why not Surgery? 

I have been offered Neurosurgery abroad, twice, including just recently, by a surgeon out of country who specialized in AAI fusion. 

Very frustratingly, surgery is not available under my own medical system at this time, and the cost of having it abroad (above) is sky high (about 100,000 dollars average.) There are also the risks with travel due to Covid. This is why I am not raising funds for at this time. The ILC foundation of EDS advocates had prepared a Neurosurgeon to do these surgeries for EDS patients in Canada (Toronto) in 2016, but unfortunately something devastating and unexpected happened, and he was no longer available. 

Nonsurgical treatments instead: 

I hope to raise funds to improve & even heal this condition through non surgical approaches and therapies which have indeed been  affective for other EDS patients with C-spine instability. These non surgical approaches can even have a positive affect on other EDS complications, for example they are likely to improve our faulty immune systems. This is a safer, less invasive, less costly and more holistic approach. Non-surgical approaches to treating my neck are called Regenerative Medicine. They have helped others including with EDS. Nonsurgical treatments are things like injections and stem cell treatments using bone marrow, to help heal and repair the area (Regenexx, PICL procedure,) peptide injections which help heal damaged ligaments, strengthen collagen and rebalance the immune system, the right supplements and specialized diet, and cautious, specialized physio with the right therapist. (I have a great functional medicine doctor though she's private pay and I am currently unable to see her as extensively as I need.) There's a good chance it'll work, and it if does not fully work, it'll at least improve my condition and buy me time until the ILC foundation is able to hone resources in another willing and trained Neurosurgeon for EDS patients.

Dreams:

I want to keep speaking out and telling my story for awareness and change, and do as much of that as I can with limited energies, using my music, modeling, writing, and advocacy through social media as a platform, and to help me cope. I want to keep promoting my music album, and reaching more people with it - and I'd ultimately love to do more music - though that is becoming more and more difficult. Recently, I was offered representation by a modeling network/agency. I currently plan to build my portfolio and prepare for possible calls, though I worry about abilities given my increasing limits (I have made them aware that I have to use a power chair and intermittent neck collars.) If I can get the finances for treatment, I can stop and reverse progression of these neck problems which are threatening to hold me back so profoundly!

History;

As you might guess from my descriptions above, the problem I've been up against for years is lack of access to proper treatments and management of my condition. First because of not being believed or listened to, then, because treatment itself is difficult, costly or even non-existent where I live (and in many other areas of the world, too.) It needs to change which is why I and others speak out. 

Recently, I've opened up about my painful story to Sebastian Rubino, and for my book. It hasn't been easy to do, but I need to do it. My current GP is aware that I want to and need to write this book. I'm now better supported. My GP tries to do what he can to be supportive within the frustrating limits of the system.

During the years I was not believed and treated very badly - which was due to a combination of being discriminated against for being autistic (I was originally diagnosed with Asperger syndrome) and having a rare disease that doctors don't want to deal with - it was hurtful and I suffered trauma, which affected my mental health... (as I shared with Sebastian and am writing about in my book). 

I was ignored, dismissed - and even accused of awful untrue things for years until I reached a point of becoming very ill, very underweight, and broken. (below image is 2016 vs 2018 after I fought for better treatment)

I am not the only one. It was damaging to me physically and psychologically, and I had to work hard to overcome the hurt and affects of medical gaslighting. I used things like my music, poetry and advocacy writing/videos as an outlet - and this shows in my lyrics -  but the experience hasn't been easy and it almost broke me. It broke my heart, certainly my body, but in the end it has not broken my spirit. 

I had to learn about my condition enough to self manage as much as I could on my own. It got to a point where I needed medications and medical interventions for my safety; such meds to help stabilize my digestive and nervous systems, and weekly hydration by IV. In time I was able to regain a healthier weight again, but I had to fight very hard for my right to attain some real help (because medical personnel were trying to blame my extreme weight loss on eating disorders and attentions seeking.)  I'm still on most of those meds today, but it was almost 'too little too late.' The Neurospinal damage was already setting in. Being left too long without the help I needed contributed to deep ligament damage.

There is no proper treatment for EDS Neurospinal disease complications in Canada, which is covered under our medical system. It's an unethical gap which the ILC foundation has been advocating to fix, but this has been a slow due to the frustrating stubbornness of many doctors, inflexibility regarding funding, and then Covid to complicate things further. People, including myself, have (and still are) suffered badly. We have no choice but to pay out of pocket to get help at this time. Some people have just not been able to attain the funds to get help for their debility and pain. Lives have been lost because it affected their mental and physical health so terribly. The issue with lack of access and very limited resources for EDS patients is brutal, but it isn't going to change any time soon - especially thanks to Covid. The more we speak out the better chance of moving change. What's available now is private pay. Unfortunately, the Canadian Healthcare system is not what many people (especially in the US) think it is - especially when it comes to rare or unusual conditions like EDS. 

I won't lie and say that this experience doesn't at times affect my mental health. I'm trying my best, but time is not on my side. I need to access the right intervention for this. If I don't get the right help I face a lot of suffering, severe disability, potential need to be separated from my family and enter a care home, and/or likely a premature death. 

I was discriminated against and denied care for several years and due to this various complications I was suffering from went untreated. I've suffered ligament damage - which caused my neck to go from stiff and annoying to unstable and excruciating.  My opinion is that this time period resulted in the ligament damage that caused the C1-C6 instability. Dr Blaskovich, a renowned chiropractor and sports medicine specialist (who recently did my DMX motion X-ray and report on the neck instability) has verbally agreed that my opinion may possibly be the case. Unfortunately though, I am past the time limit to file a medical malpractice lawsuit. During the time I could have done it, I was too busy fighting for my life. 

However, family and I are in the process of filing complaints with the College of Physicans and Surgeons and patient care quality, against the physicians and medical personnel responsible for the poor treatment and harsh, untrue things written about me (along with my book.) I feel I need to do this for the closure.

No alternative to fundraising:

Currently, I'm on disability and of low income, trying to feed and parent two boys while managing my general everyday health issues, bills, transportation etc. and there just isn't enough to fully attain what I need with what I described above. I have no family able to help, my husband (whom I'm separated from but still friend with) is helping as he can but is also disabled and limited and I do not have the credit to get a 'medical loan.' However, I continue to try and earn moneys via social media and product (music and books) sales, and modeling jobs where possible - with proceeds going toward this cause right now. Anything I am able to earn will go into this cause, at this time, and I hope and strive for financial freedom in the future.

Conclusion:

If you support me and like my content, and want to see me able to continue creating as well as having a quality of, and safer, life; please consider helping with anything you can and sharing this with everyone you can, or being part of our team of promoters we call #TeamRosiesLife 

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Scarlit-Rose Ashcraft posted a new update:
about 1 month ago

Update #1

I really want to thank everyone who has reached out to donate something you could, even in times like these. I have to get started and face this and try. I can now, and it means a lot to know that you guys believe I deserve it. I tried to post something on my FB but nobody could see it :(

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