To whom this may concern, this is my story:

(Photographic overview of my story here)

I am Scarlit-Rose Ashcraft. Friends and family often call me Rosie. I’m a 35-year-old music artist, fashion lover, writer, mom, rare disease warrior and advocate, neurodiversity advocate, and survivor. I create music and creative content, as well as educational content which includes sharing some of my own experiences for awareness. I create catchy and meaningful indie synthpop music and have released a music album - Dreamer Queen Not Under the Machine - under the name Scarlit Rose. It's on Bandcamp, Amazon, YouTube, Spotify and Itunes, and it's receiving very positive reviews. I'm now working on new material, as able. Currently, I'm working on a book about my story, called Out Not Under. I'm also a returning student in online school. I have to do much of what I do from bed.

I suffer with an unusual, complex, debilitating, very painful and potentially dangerous condition called Ehlers-Danlos Syndrome. EDS is genetic and causes by weakened collagen - your body's glue. The weakened collagen effects the musculoskeletal system and spine, the vascular system, the digestive system, even the urinary system and organs. This causes a multitude of effects, such as;

Joint hypermobility and looseness resulting in severe pain and damage (especially when specialized physiotherapy is not implemented early), Soft elastic skin and veins which cause easy bruising and injuries, autonomic nervous system disorder (dysautonomia) especially a form of it called POTS (post orthostatic tachycardia syndrome) - POTS causes a high heart rate when standing up, and unstable blood pressure and often requires meds and extra fluids (sometimes by IV) - heart and circulation problems, bleeding issues and risk of aortic dissections and other ruptures, Immune system problems eg. vulnerability to infections & mast cell activation disorder (multiple allergies, flares, reactions), GI system problems ie digestive disorders, gastroparesis, bowel problems, urinary problems ie. frequent urination, incontinence, and/or difficulty emptying, weakened bladder and/or neurogenic bladder, frequent UTIs and/or kidney infections, development of spine and C spine (neck) instability, neurological problems, dental problems etc.

For a few years, I've been suffering not only with EDS itself, but with an extremely painful EDS complication. My C1-C6 discs in my neck are unstable. I was diagnosed with this 2018, in the USA, due to lack of the proper diagnostic facilities in Canada. This complication requires an upright MRI for proper diagnosis. At that time Dr Henderson proposed a surgical fusion which I was unable to afford. I've been unable to access the surgery I need here, and attempts to raise the large amount funds for surgery abroad have been unsuccessful.

I'm in pain and discomfort 24/7, and often confined to my bed. My pain and symptoms are much worse when I'm upright. This limits my upright time, compresses my brainstem, and causes a multitude of debilitating problems. My mobility is affected and I have become quite de-conditioned and weak. I walk either with a walking stick to aide me. For prolonged time out or on bad days, I use my power wheelchair (it was bought second hand and self funded.) I have to take painkillers which are beginning to really hurt and damage my digestive system.

I believe that I developed C spine instability because my EDS diagnosis was significantly delayed due to a 2013 psychiatric report (written by Dr Kiri Simms) which unfairly mis-labelled me as having 'Facititious Disorder.' This then caused the doctors and the entire medical system to pre-judge and mis-judge me, and deny me proper care... repeatedly. This went on for a few years. It was extremely traumatic. I am not the only EDSer who has been mis-labelled as 'Factitious.' I also have (diagnosed) mild autistic spectrum disorder, and my way of communication was discriminated against and misunderstood, too.

Due to this lack of help (plus the emotional trauma & devastation of that) I became very ill with several (sometimes frightening) issues, especially with my immune system, autonomic nervous system and GI system. I was left to fend for myself and try to use home remedies. This lack of internal health stability (which eventually got me down to around 90 ibs) and lack of access to proper physiotherapies likely weakened and damaged the ligaments in my neck, leading to the instability. I eventually fought to prove my truth and had to spend and raise money, which I didn't have, to do it. This included having to do more than one GoFundMe campaigns (offering my music and books in return) and traveling to the USA more than once to get assessed and backed up my EDS-aware specialists.

I was diagnosed with EDS in 2014, by a world renowed EDS expert (Dr Alan Hakim) while on a (sponsored) trip to the UK where I was co hosting an event. I had suffered a severe, stroke-like autonomic nervous system crash, from pushing myself too hard (and I had not been receiving proper care.) I haven't been the same since that crash. I was initially deemed unfit to fly because my blood pressure was erratic and unstable. I spent 5 weeks in the UK recovering, and seeing doctors, including Dr Hakim. I had to be supported by an emergency GoFundMe, which put up by my concerned friends and family.

However, shockingly, when I returned home the medical system denied me care for another year, trying to accuse me of 'intentionally orchestating' the event and subsequent diagnosis in the UK. It was not until my family (including my dad, a retired lawyer) threatened to sue them - because I was very sick, underweight and had a mental breakdown - that they finally began to back down and (somewhat) accept my diagnosis.

Being told that I need expensive Neurosurgery to fix my problem devastated me, because currently in Canada there are no available Neurosurgeons, and I cannot afford the 100, 000 dollars to do this abroad. I have felt very angry and in grief that I was failed and mis-labelled, and now I've developed this painful, life limiting, progressive and potentially dangerous complication.

The ILC Foundation in Ontario has been fighting for the funding to train and employ a Neurosurgeon for EDS patients, in Ontario. In 2016 they had Dr Shamji ready and starting, but then he was unexpectedly arrested for killing his wife. Since then ILC has struggled to get another surgeon, with the Government/Medical system semi ignoring their pleas. Recently they held another meeting to emphasize the urgent need. I don't know the outcome of this. I will provide ILC executive direct Sandy Smeenks' contact info below - Sandy is aware that I am writing you and is willing to chat/provide any further helpful information.

EDS is considered rare but, according to advocates, it's likely not as rare as assumed. There are many cases going undiagnosed. People with EDS effects often suffer terribly with complications, while hugely lacking support and help. There is a huge difficulty with obtaining proper diagnosis. Symptoms of EDS are often 'pathalogized', mistaken for and labelled as supposed 'psychiatric' until they are very severe, causing obvious disability and when it may be too late. Most people with EDS unfortunately have PTSD from poor and/or ignorant treatment and delays re: proper care and help. Diagnosis is often delayed (and sometimes flat out denied) because of this, which results in lack of proper treatment for the diseases' affects and worsening of complications.

Worse than this, once people finally do get diagnosed, there is a huge problem with lack of education re: EDS' effects, how to best treat them, and access to care. A lot of the care that is absolutely essential to EDSers, is either unavailable or considered 'elective.' Quality of life of EDSers is often much better among those whose incomes are higher. EDSers with low income are suffering immensely, in spite of the fact that EDS is quite an invisible disease and people often don't look as sick as they are (for example Brooklyn, the young woman who recently passed away and I will provide the links.)

Many EDSers (and other chronic/complex/rare disease sufferers) experience frustration, devastation and hopelessness about the lack of care and understanding from the medical system and from society, too. They find themselves considering MAIDS (medically assisted death.) I myself have thought about MAIDS, but I am still fighting and trying to hang onto hope that my income and/or access to resources can improve with awareness.

I do have a supportive GP now. I have a care plan which my CLBC support worker and I had to fight hard for and is supported by my GP. It better asserts my ASD, EDS, and trauma. However, I continue to suffer with having to live with unstable discs as well as various EDS complications. I am also suffering with PTSD because of how I was treated by the system, in the past. I really would like to heal, and I do feel that lack of ability to access the Neurosurgery I need is making this really difficult. Because my GP is more supportive, we may be better able to sort through and work out better management for some of my complications - though it will be slow and challenging trying to work with specialists whom are too often closed minded - but there's nothing he can do about the neck other than support me and refer me *when there is a Neurosurgeon available. Currently, there is not.

The problem seems to be that we are up against a broken system (which the pandemic made worse.) This medical system predominantly excludes EDS in terms of being properly educated about it and providing proper care. Many specialists will refuse to see EDS patients. I have better care than I did previously, but unfortunately I am overall still falling through the cracks and self funding a fair amount of what I need to sustain bare-minimum-humane living. Some of my medications are more exotic and specialized, and not covered my pharmacare. This happens a lot when you have a rare disease. It's hard on me because I am low income; unable to work outside the home and on disability. At this point I feel am beginning to feel a sense of desperation and burnout which sometimes causes me to again think about MAIDS (even though ultimately, I really want to at least improve halfway, and live.)

Although we have some awareness, education and resource honing efforts in Ontario, I believe that in the other Canadian provinces - including our own BC - more awareness, education and resources are urgently needed. (There is a BC branch of the ILC, that is still small and underfunded. I will provide the link.)

- Scarlit-Rose Ashcraft

Links:

ILC Foundation - https://www.theilcfoundation.org/

Joining EDS Families (Call for Government Support/Treatment) Conference: https://www.youtube.com/watch?v=I80HZZrq2w8&feature=emb_title

Kendra's Story (unfortunately passed away) https://www.bclocalnews.com/news/despite-surgery-in-mexico-langley-woman-still-plagued-by-pain/

(This one mentions she has Ehlers-Danlos syndrome, which caused the Eagle syndrome) https://www.facebook.com/donate/2263222417242295/2297941670437036/

Remembering Kendra facebook https://www.facebook.com/kandi29

Brooklyn Mills (unfortunately passed away)

Oakville Teen Battles For Out of Country (Surgical) Treatment: https://www.thestar.com/news/gta/2011/10/30/oakville_teen_battles_for_ohip_coverage_of_outofcountry_treatment.html

https://journalofhumanitarianaffairs.blogspot.com/2011/11/ontario-teen-struggling-for-life_25.html

Article 'I don't think there's ever a day I don't feel like crap' -

https://torontosun.com/2015/10/28/women-take-plea-for-help-to-queens-park

ILC Memorial Tribute for Brooklyn https://www.theilcfoundation.org/tribute-to-brooklyn-mills/

My 'Duct Tape Challenge' (ILC Foundation) https://stillagirloutside.blogspot.com/2021/05/the-duct-tape-challenge-my-story.html

MAIDS information:

https://lifecollective.io/lifecanada/articles/proposed-changes-to-maid-are-pure-madness