Help Tara breathe and survive unpaid medical leave
Hi, I'm Tara. And I could really use your help.
The TL; DR
I am fundraising for three months of (basic) living expenses plus the cost of an ambulatory/mobile CPAP machine. Anything helps. I most pressingly need money for rent and living expenses for July. If you aren't comfortable with or are unable to use GoFundMe, please check out "Other Ways You Can Help" for more options.
Summary
I have a rare and debilitating autoimmune disease (Relapsing Polychondritis, or RP). I have run out of paid medical leave and have exhausted my savings. I am asking for funds for two purposes: 1) to allow me to survive for three more months here in Vancouver, BC, which is where all of my doctors are. Because my disease is so rare, it is very difficult to find specialists with appropriate expertise. [I am in Canada on a work permit; returning to the US while I am still too sick to work could seriously jeopardize my health/life.] 2) To purchase an ambulatory/mobile CPAP machine. I currently need to use a CPAP machine around the clock to support my breathing. Unfortunately, CPAPs are designed for nighttime/bedside use and mine is not mobile. An ambulatory CPAP will hopefully allow me to be able to attend medical appointments and do basic chores/daily tasks without becoming dangerously short of breath—this would afford a huge improvement to my quality of life.
Backstory
I am—or was—a postdoctoral researcher at UBC. [For non-academics, a postdoc is a post-PhD research position at a university. Postdocs typically do not pay well, but they can be a stepping stone to a faculty job.] Because I am in Canada on a work permit and was paid by an academic fellowship, I am ineligible for any EI or disability benefits in Canada. But because I live in Canada, I am also ineligible to receive SSI from the United States. Due to the precarious (and peculiar) nature of contingent/contract-based academic jobs and the fact that my last US employer was the University of Massachusetts/the Commonwealth of Massachussetts—which does not pay into Social Security—I am very likely also ineligible for SSDI. [I am applying but expect to be rejected.]
I'm 36 and have spent the majority of my adult life in academia, with the hopes of becoming a professor. I'm not partnered. And I live in Vancouver, BC, which has a fairly high cost of living. [I share a small apartment with a housemate.]
In January of 2020—after over a decade of worsening autoimmune symptoms—I was finally diagnosed with Relapsing Polychondritis [RP], an extremely rare and serious autoimmune connective tissue/collagen vascular disease. I was also diagnosed with Sjögren's, and am undergoing further work-ups for autoimmune/autonomic issues. Unfortunately, because RP is so rare, many medical doctors have never heard of it and do not know how to recognize the distinguishing signs and symptoms. It also has no blood markers, so by the time I was diagnosed I had already been very sick for quite some time; it took my kidneys beginning to visibly bleed before I was finally referred to a rheumatologist.
I spent most of 2020 on partial medical leave, with the hope that treatment would allow me to regain some functionality. But even part-time work left me exhausted and unable to do the necessary self-advocacy involved in treatment for a rare disease. And although I tried a number of conventional DMARDS (disease-modifying anti-rheumatic drugs), most produced only minor improvements. I only managed to keep working at all by relying on higher and higher doses of prednisone (a corticosteroid). Unfortunately, prednisone is a double-edged sword—it reduces pain and inflammation but can be extremely damaging; by the end of 2020 I had developed steroid-induced Cushing's syndrome. And unfortunately even prednisone failed to prevent the progression of my RP.
I began full-time medical leave in March 2021, with the hopes that higher doses of immunosuppression would allow me to slowly taper my prednisone. Unfortunately, the attempt to taper produced a dangerous airway flare by the beginning of April, leaving me unable to breathe without extreme difficulty. Since then, I have been in and out of the hospital and on new and higher doses of immunosuppression. Although I improved somewhat on a very high dose of prednisone, it was not a dose that could be safely maintained, so I had to reduce back down to 40 mg, which at least has allowed me to keep searching for a more effective treatment. I have been attempting to obtain approvals for biologic medication, but there have been a ton of bureaucratic hoops to jump through, particularly because RP is such a rare disease.
What I need most right now is money and time. Medical testing and treatment attempts have been going extremely slowly. I am hopeful that I will receive approval to begin biologic therapy within the next month, but even if the first biologic is successful, it typically takes 3-4 months to see the full effect. Right now, I am too sick to do any work. Every ounce of energy I have has been going into breathing, managing my medical treatment, and trying to get my UBC contract and work permit extended by the duration of my medical leave.
The Medical Stuff
What RP does is attack cartilage and cartilage-like tissues throughout the body. Functionally, it can cause inflammation and destruction of cartilaginous structures (e.g., joints + ribcage, ears + nose, & airway + larynx) as well as organs with cartilage-like tissue like the heart valves, eyes, skin, blood vessels, and brain. RP has affected my joints, spine, ribs, ears, nose, nervous system, and larynx. One of the more dangerous complications of RP is tracheobronchomalacia, which is the collapse of the trachea and bronchi.
I also have that.
[Alt text: CT report describing 85% expiratory narrowing of the lower trachea and 70-80% expiratory narrowing of the proximal mainstem bronchi. The report concludes that it is "in keeping with tracheobronchomalacia in relapsing polychondritis."]
Right now, just trying to breathe is extremely effortful. It is difficult to speak without having to pause for breaths. And the worst part is how badly my brain and energy levels are affected. Just stringing together sentences is a challenge right now. [It has taken me nearly a month to put together this GoFundMe.] A continuous pulse oximeter has given me some insight into why I may feel so awful during the day:
One of the things I was pinning my hopes on was surgical treatment. There are a couple of different surgical treatments that have been used to treat tracheobronchomalacia. Unfortunately, when I met with the thoracic surgeon a few weeks ago he does not believe that I would be a good candidate for the most evidence-based surgery (i.e., it is likely I would have a bad outcome). So this leaves me with medical management in the hopes that finding an adequate treatment for my RP will help to stop or even reverse the impact on my airway.
The good news is that using a CPAP around the clock helps maintain my oxygenation and reduces the stress of breathing. Unfortunately, though, with my current CPAP I can't leave my bed. Other patients with tracheobronchomalacia have regained some quality of life with by using smaller, more ambulatory CPAPs equipped with battery packs. As this is "off-label" use of a CPAP device, which is designed for sleep apnea, this isn't something insurers are willing to cover. So in addition to living expenses I am asking for money to purchase an ambulatory CPAP device.
Other Ways You Can Help
If you are unable to use GoFundMe, I can also accept donations via (), Ko-fi , or Canadian e-transfer.
Given the current state of my health, I am unable to go buy groceries, do laundry, errands, etc., so gift cards to the following services would also be a huge help:
Instacart (Canada): https://instacartca.launchgiftcards.com/
UberEats (Canada): https://about.ubereats.com/ca/en/how-it-works/uber-eats-gift-card/
Amazon.ca (need to edit/select gift card options): https://www.amazon.ca/dp/B07TRWGYDH/ref=s9_acss_bw_cg_gclptcg_1a1_w?pf_rd_m=A1IM4EOPHS76S7&pf_rd_s=merchandised-search-4&pf_rd_r=DJZ104VG16MPEFX69RKH&pf_rd_t=101&pf_rd_p=7f22cc0d-5bc0-4b5d-a27d-414894e624ac&pf_rd_i=9230166011
WeDoLaundry: https://www.wedolaundry.ca/gift-cards
If you prefer to support local businesses, this local grocery delivery is allergen-friendly (for me) and also has pre-prepared food from local restaurants:
Legends Haul Grocery: https://shop.legendshaul.com/legends-haul-giftcard.html
Money goes further on groceries than food delivery, but I also have food delivery accounts with:
SkipTheDishes (make sure flag = Canada): https://www.skipthedishes.com/gift-cards/purchase
DoorDash (Canada): https://doordashca.launchgiftcards.com/
If you prefer to avoid non-US currency, I still buy Kindle e-books and audiobooks from US Amazon.com:
Amazon.com (need to edit/select gift card options): https://www.amazon.com/Amazon-1_US_Email-eGift-Card/dp/B004LLIKVU/ref=mp_s_a_1_3?dchild=1&keywords=gift+card&qid=1623624723&sr=8-3
Gift cards can be sent to [E-Mail ausgeblendet] (complete the domain & swap in the @ to email). I do not have the cognitive bandwidth to respond to individual emails at this time but I am truly grateful for any help.
Non-Monetary Assistance:
If you are at UBC and have the influence to get the administration to extend my contract and work permit by the duration of my medical leave (I'm a Banting postdoc; my salary comes from the Banting PDF), I would greatly appreciate any assistance you might be able to offer. I have been trying to get things extended for months now but have encountered certain barriers.
Alternately, if you are Canadian and can help me stay in Canada...
Thank you. Truly.
If you are interested in learning more about Relapsing Polychondritis, or if you would like to donate to the Relapsing Polychondritis Foundation to support rare disease research, go to polychondritis.org.