This fundraiser is to help me, Dr. Scully navigate debilitating medical issues--some of which are life-threatening--that were misdiagnosed, undiagnosed, and left untreated for so long that I am not in danger of losing mobility and more.

I have a genetic connective tissue disorder that wasn't diagnosed until 2023, at which point, so much damage had been done that the connective tissues supporting not only joints and bones, but also organs, blood vessels, and vital areas of the brain and spinal cord had started to degrade. As such, I who once moved like the wind as my Cree name implies (Wepastan) live with a very serious and debilitating form of hypermobile Ehlers Danlos Syndrome (hEDS) and the trifecta that includes Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). POTS is an autonomic nervous system disorder that disrupts the ability of the body to naturally regulate things like heart rate and blood pressure, temperature, rest-and-digest/fight-or-flight, etc. MCAS is when the mast cells--the body's prime immune response cells--become hyperactive. They live in and play a role in the body's connective tissue and can degrade it over time, causing a feedback loop in worsening connective tissue disorder symptoms.

In addition, Dr. Scully experiences the super-syndrome of severe vascular compression syndromes including Median Arcuate Ligament Syndrome (MALS) causing severe stenosis of two major arteries coming off of my abdominal aorta (the celiac artery and superior mesenteric artery). The stenosis is so severe that the blood flow is decreased approximately 90% (or more) in each artery, causing chronic mesenteric ischemia. I have resulting liver and other organ damage. MALS, in my case, is caused because the Median Arcuate Ligament coming off the diaphragm is compressing the arteries and causing severe pain, but also loss of blood, difficulty taking deep breaths, and more.

I also have Superior Mesenteric Artery Syndrome (SMAS) wherein the same compressed, stenotic superior mesenteric artery is also compressing my duodenom (the third portion of my intestines), also leading to severe pain, bile reflux, nausea and regurgitation, and more when eating alongside liver and other organ damage. This disorder is 33% fatal and difficult to treat.

That artery is also compressing my left renal vein--the vein that supplies blood to my left kidney, leading to kidney damage, chronic kidney stones, urinary tract issues, severe back and pelvic pain, venous congestion, and even head pain, dizziness, and worsening POTS symptoms as blood flow is impacted. This is called nutcracker phenomenon of the renal vein or Nutcracker syndrome and - like the above two vascular compression syndromes, little is known about it and few providers can treat it appropriately, but what is known is that it is debilitating and threatens the well-being of my organs, blood vessels, and more.

Additionally, I have chiari wherein my brain is herniating more than 6mm below the hole in the base of my skull causing severe pressure headaches, tinnitus, hearing and visual loss, difficulties swallowing and with fine motor skills, and reducing my mobility and ability to drive. It also reduces blood and cerebrospinal fluid flow to/from the brain putting me at risk for vascular and stroke risk. I already have a stroke history and lesions on my brain. I get daily headaches, sometimes some so severe I cannot move over without crying out in pain that keep me bed bound for days on end without any relief and have sought naturopathic and allopathic treatment for decades. I have intractable, as it's called, chronic migraine.

I also have tethered spinal cord that is causing pain, scoliosis in multiple areas of my spine, bilateral leg weakness, and more. It was missed for years and dismissed as I started to need a cane, then a walker, then a wheelchair. I kept falling. My hips hurt so severely and I told providers I could feel them dislocating. That was dismissed until finally, lo and behold I was believed when they discovered I had severe hip dysplasia in both hips, labral tears--front and back--on both sides--and a cyst on one of them from the severity of the wear and tear. I have spinal stenosis, multiple spinal vertebrae that are out of place, discs that are degenerative and diseased, and more. The spinal cord, however, will not budge. It is stuck in my spinal canal likely contributing to all this disease that was written off. It has now lead to clonus, hyper active reflexes, uneven leg length, falling and multiple injuries, neurogenic bladder, sever constipation, and more. The neurological exam and issues indicate surgery is urgently warranted to prevent further decline and there's no guarantee I will have improvement, but the hope is some improvement will show.

I have de-tethering surgery scheduled for Feb. 25, 2026--almost half a year after starting this fundraiser! I may still need chiari decompression or something to address cervical instability. I also have highly suspected adenomyosis (it has been identified as much as it can on imaging and through clear clinical symptoms and the only other way to diagnose it is through a hysterectomy that examines the uterus under microscope). I have been waiting a hysterectomy for 20 years, but had to suffer through being asked out on a date by a gynecologist in my 20s, a gynecologist treating and billing me for medical issues I didn't have and not treating me for issues I did, and just last year having to restart with a new gynecologist when my prior one kicked me out for "advocating for myself" (I simply asked for clarification on a policy for surgical clearance, but that's medical racism for you).

For years I suffered lab results showing kidney decline, but no one paid attention and I'm now in Stage 2-3 chronic kidney disease, likely due to nutcracker syndrome and/or malnutrition from vascular compressions. I begged for help for my GI symptoms, but was told it was anorexia and said that my anorexia symptoms would improve if I had help with my GI symptoms, but was told to manage my stress, was told I would "make an interesting case study" or that "the only thing that could be done for me was to see a colorectal surgeon to have my colon removed." I had massive migraine attacks since I was a child and multiple concussions--some so severe I lost consciousness and providers in my adult life knew about this, but no one bothered to do anything but tell me to "manage my stress" and "drink more water" despite that I had a water bottle in had at every appointment and complained of urinary frequency (implying that more water would only exacerbate another known issue). Despite a stroke in 2005, I wasn't given follow-up care of migraine management for another 10 years, at that point still minimal through primary care. It wasn't until I was 40 that I was finally referred to a neurologist and it wasn't until I was 43 that I was given an MRI of my brain and 44 that I was diagnosed with chiari malformation and tethered spinal cord, congenital issues I've had since birth! I was even laughed at by a neurologist who said I just had "a couple of little lesions" and it "wasn't MS" despite a strong family history of MS. He refused to work up the other things it could be or that the lesions could be associated with vascular disease and stroke risk.

I also have a heart attack history, from malnutrition, but a cardiologist told me it was better to be thin, "trust me," he added, and that my issue with osteopenia was a thin white woman's issue. I sent a strong letter to his medical director reminding him that people of all body sizes get heart attacks, that that level of fatphobia is why people die, and that I am Native.

Unfortunately, this gaslighting is common in my conditions and worse so where I live. For all of these vascular compression and neurosurgicial issues, there are few doctors who know how to diagnose let alone treat these conditions and I don't have much money, so this go fund me is set up to help me:

Your support means the world. I revised my bio for my story. You can see the older version below.

For a comprehensive list of my issues with links for learning more & validating my claims (I am, after all, a researcher, see my document I created called living with hEDS & co with Dr. Scully here

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Older bio:

I'm starting this fundraiser to help cover the costs of personal & medical care due to health conditions that have made me increasingly disabled and made caring for myself more difficult.

For those who know me, I am from Michel Callihoo First Nation Band and was given the Cree name Wepastan (blown away by the wind) because I am always moving, working hard, and seemingly everywhere all the time. From hiking over 100 mountains by myself across the continent, becoming an Adirondack 46er on my own, being an award-winning dancer, finishing my Ph.D.—with distinction—and winning the all-university dissertation award for my work, to planting a near forest in my home, learning new skills every chance I get, being a writer & a decorator & crafter & an outspoken fighter for justice & liberation & more, I have always been independent, one to be there for others, and one to give. I have asked for help—certainly; have always been chronically ill & once homeless. But I often give far more than I ask for, do far more than I should, and what help I receive I always give back tenfold.

My life of hyper-independence started to erode after I got sick with Covid in 2023 & recently took a nosedive starting in the Fall of 2024 after I suffered 2 head injuries/concussions (TBI) in 1 day. Then in March 2025 after a respiratory virus that turned about to be quite serious, I developed severe weakness, new numbness, tremors & more. I found some days I could hardly walk to the sink to get water or hold the weight of a glass of water in my hands. One of my providers witnessed this & other eye & neurological symptoms including finding hyperreflexia of my lower limbs and worsening gait ataxia on exam. Since that time, my ability to stand let alone walk has continued to diminish most days. I fall easily, cannot hold myself up from my legs to the middle of my spine for long, and have lost my ability to drive, run errands, do most household chores, cook, etc. In addition, my lifelong & other chronic illnesses symptoms have progressed & grown worse. Most days I am housebound due to tremors, visual issues & leg weakness , fatigue, migraine & other head pain & severe dizziness & visual issues that often leave me bedbound. My eyes do not process visuals easily & my head is hard to hold up and legs go numb sometimes even when I’m seated. Even when these symptoms are not flaring as significantly, I am often flared in a host of other chronic illness symptoms that I've dealt with my whole life & many have also grown more unmanageable that I note further below.

I have Hypermobile Ehlers Danlos Syndrome (hEDS), a genetic, connective tissue disorder (not an autoimmune condition). EDS impacts all the connective tissue throughout the entire body—especially but not certainly limited to the joints—so the lining of the organs, blood vessels, dura matter around the brain, etc. are all fragile. As such, the neurological symptoms I have been experiencing prompted rounds of imaging that show my brain is herniating through the base of my skull, a semi-common co-morbidity of hEDS called Chiari malformation that can be due to weakened connective tissue surrounding the brain tearing easily from minor (to major) injury and causing the brain to sag. Another reason can include instability in the connective tissue supporting the neck that contributes to the brain sagging. Also (and as my provider and I suspect is at least one of the reasons I have this problem) is tethering of the spinal cord that "tugs" at the bottom of the brain, but—for people with hEDS—is often not easily visible on routine MRIs and so often gets dismissed by neurosurgeons, therefore we suffer without treatment despite worsening symptoms.

Unfortunately treatment for Chiari/brain sagging is poorly understood/managed even in the general population, but fewer still when it manifests alongside people with hEDS specifically. A neurosurgeon may elect to "wait and see" how things progress while I grow increasingly more immobile, lose feeling in my legs completely…or worse. Already I have injured myself a few times without knowing it because of a loss of feeling in my legs and I stopped driving when I couldn’t maintain strength enough to keep my foot on the brake pedal without clonus/tremors. Conversely, a neurosurgeon may rush to do brain surgery without looking for the many reasons why my brain is herniating in the first place (i.e. damage to dura matter/cerebrospinal fluid leak, tethered cord, severe neck instability, etc.) and work to resolve those issues first, thus subjecting me to an invasive surgery that also does not have benefit. I may have intermittent cerebrospinal fluid (CSF) leaks—common after a head injury, of which I’ve sustained multiple—and also an under-diagnosed phenomenon in the hEDS population similar to tethered cord when it manifests alongside Chiari and related symptoms.

I have been referred to see Dr. Klinge who is a specialist in this area who should be able to properly assess me and hopefully help manage these neurological manifestations with my Chiari. The longer I wait, the harder and longer the pathway to recovery will be and the possibility that permanent damage—if it has not already happened—could happen.

I want to get back on my feet, to be Wepastan, blown all around wherever I am needed, but especially to be with my community of Michel First Nation and our kin in Kelly Lake Cree Nation and up near Grande Cache that I love. I want to run free in the mountains again, dance even if just to teach it to the little ones, to garden for the next generation, & to be strong to be there for my nieces & nephews. Maybe I won’t be back to my old self fully and I accept that; I know sometimes I need to slow down and this is my body telling me to do that, but I want part of my life back if I can. I want to walk the lands again as much as possible or at least have support to get the care I need regardless of the outcomes. We all deserve that.

Your support would mean the world to me & would help cover:

As someone receives private insurance & disability I am in a great place of privilege, but I am also therefore ineligible for state/federal assistance & my income is not enough to cover all of these expenses myself, especially when it is is fixed disability income & I will lose a lot of it & even maybe be without any income for a short "waiting period" clause (as is the unfortunate ableist case in many government and private disability plans).

I am not the most important—we are all struggling to get the care we need in a capitalist and colonial country and the world growing more violent by the day.

I am asking for help in the hopes that it might allow me the space to again be a part of offering hope to the next generation, to showing up in some way again and offering education, my writing, my voice—even my ability to write, education, and share in the ways I used to always share, which have been diminished due to brain fog, my inability to focus and hold up my head or take in visual and auditory information, and my inability to sit (or stand) for long without pain and other symptoms flaring.

Some days the neurological and other symptoms impact my word recall and the pain is so strong, that it can be hard to talk. My hEDS impacts my vocal cords, ability to think clearly, and—because of severe facial pain/jaw dislocations—even talking can cause pain in my head/neck/back and jaw. I get dizzy with head pain turning my neck or moving my eyes in my head, have widespread joint pain and am prone to falls, sprains/dislocations and other injuries, and more. I’ve had multiple injuries that don’t heal well, have scoliosis and spinal stenosis, a couple of vertebrae fractures and subluxations, and a host of degenerative changes/disc desiccation problems in my spine. I’ve had a TIA, had Adenomyosis go undiagnosed for 20 years, have had ringing tinnitus in both ears literally 24/7 since 2021, a host of gastrointestinal issues, and more. In particular, having suffered from anorexia since I was 9, I sustained 2 heart attacks & have an often symptomatic low heart and arrhythmia as well as mild kidney and liver organ damage. Many of my illnesses have been poorly understood by the medical community, are illnesses that required me to fight for me to be cared for--like hEDS, Adenomyosis, and anorexia, and with anorexia, carry among the highest mortality rate of any psychiatric illness and... still I am remain.

I am a fighter and with your help, will continue to move like the wind again to be there for my loved ones once again. Kinanâskomitin—my many thanks.