Cate's medical care for rare and complex illness

Hi,

My name is Cate. I am 34 years old. I was recently diagnosed with an entire alphabet of chronic and complex diseases with a genetic root. Those are Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, Post Orthostatic Tachycardia Syndrome, Idiopathic Intracranial Hypertension, Intersticial Cystitis, Cranio Cervical Instability, and many more.

These diseases started for me after a perfect storm of nervous and immune system injuries back in January 2024, and were made worse throughout the months by medications, medical gaslight, traumas, and my condition deteriorated to the point that I had to leave my home, my dog (that I love more than anything), to go try to find answers as to what was happening to me. I traveled alone, in my wheelchair, trying to find help, which I finally have found after going around the entire country and even to the US.

My doctor is amazing but my treatments are expensive. As you can imagine, I have been unable to work and have used all of my savings as well as my RRSP to receive care and sustain myself. I have to pay for a room in Calgary that is extremely expensive, as well as my own mortgage, my food, my treatments (most of it is private), insurances, medications (they got to be compounded as I get reactions to everything), supplements (I have tons as metabolically, like my doctor says, I was 'destroyed').

I once was a healthy and very active young woman. I am a social worker and have spent the past 10 years of my life helping others. Not being able to walk my dog and being scared for my life has been the most difficult thing that's ever happened to me. I am fortunate I have found a doctor who specializes in those diseases, as the regular health care system left me for death.

I need to stay in Calgary for the moment as there are no services in Yellowknife for me. I need specialized physiotherapy for Ehlers Danlos as I dislocate joints constantly, I am seeing a NUCCA which is a specialized chiropractor as I don't have connective tissues and muscles at this time to stabilize my spine and it creates major issues. I am being referred to the MAGIC clinic here in Calgary for my rare and genetic disease. I also will be seeing other specialists like neurology, cardiology, physiatry, etc.

I have lost everything already. A job I loved, my career, my home, my health, all of my savings... I desperately need to offload some of my stress and I don't want to go bankrupt. So far, I haven't been able to receive a salary for the past 9 months as my PCP couldn't understand my condition and I was also not in a place to be able to do anything but survive. The additional financial stress is one of the worse thing that's happening to me right now as it affects my condition negatively.

Despite these conditions being genetic, some people recover. Of course the gene itself doesn't go away, but with the right treatments, I could get my life back. And I will. I am very stubborn and have been healthy my entire life through diet and exercise, etc. And I know I can do it. However, this disease involves the nervous system and the more stress I have, the more detrimental it is in my recovery. That is why I am turning to GoFundMe to try and lessen that burden a bit as I need to get treatment.

Anything helps, really. I am very thankful for you to be reading my story and I hope to be able to return to my normal life in the next few years with the help of my doctor and my stubbornness to know that this can get better.

If you want to do your own research on these conditions, my entire list of diagnosis so far are:

hEDS

MCAS

POTS

CCI

IIH

autoimmune small fiber neuropathy

GI dismotility

Adrenal insufficiency

Intersticial Cystitis

Pre-diabetic

Anemia

Immunocompromised (low IGg2)

I want to add a few links to what my conditions are and how they are triggered. There is still a lot that is unknown about those, but we know epigenetic changes are at the root of the disease onset. These changes can be caused by: medications, toxins, viral infections, chronic stress, brain injury, traumas, and many more. In my case, it was initially caused by an antibiotic as I have found out I have poor methylation (you can find info on the article "Methylating the alphabet") and further exacerbated by the encephalopathy this caused me (people with connective tissue disorders shouldn't take these antibiotics as they are dangerous for us, bust most of us don't know we have these conditions) and the medications I was then prescribed that made the encephalopathy worse. My nervous system was broken which caused a metabolic shift, causing epigenetic changes, triggering these profoundly devastating health conditions.

To know more about the Pentad supersyndrome: https://youtu.be/2mIzE2X9OJk?si=RQ9T_BAIJpQ7Wnjw

To know more about how methylation is linked to all of this and why there is hope with the right treatments and doctor, despite what we can sometimes read about it: https://www.qeios.com/read/ZPYS4F

If you don't want to use the platform and prefer to help me directly, my email address is cath.larose arobas hotmail dot com

Bless you all ❤️

Cate xxx