My name is Hafiza and I am a 20-year-old community organizer in NYC suffering from chronic & terminal complications of post-acute sequelae of SARS-CoV-2. In September 2024, I became sick with SARS-CoV-2 after returning from my 19th birthday trip. Since, I have developed Interstitial Lung Disease (specifically, a rare kind called chronic hypersensitivity pneumonitis), Long COVID/PASC, ME/CFS, Dysautonomia/POTS, in addition to a myriad of debilitating neurological symptoms I am undergoing treatment for including cognitive impairment, memory loss and seizures. My cHP is driven by my hypersensitivity to unidentifiable environmental antigens; in simple terms, I am deadly hypersensitive to the environment and continuous exposure (primarily all outdoors but also indoors) will progressively worsen my disease prognosis. Due to this, my quality of life has drastically reduced as I have become more isolated from the outside world and am left housebound. Even with a high quality respirator, going outside leaves me bedbound with intense lung pain and damage. As a young disabled patient with ILD, there is no quality of life for me without my bare necessities and survival met. Due to financial distress, I am reconsidering if a lung transplant is a viable future for me should candidacy be granted with disease progression, as an extension of life comes with more financial obligations that I do not have the stability and safety for. Since September 2024, I have become a full-time patient with 75+ appointments from my onset 13 months ago, a care team of 15+ specialists, at least 5-15 doctor appointments a month, in addition to managing my chronic pain and treatment regimen alone. I require care, assistance, and accompaniment from my roommate and friends for day-to-day routine tasks and errands, otherwise effortless pre-pandemic and pre-disability.

Before I developed chronic & terminal illness from SARS-CoV-2, I had a very fulfilling social life as any other young adult. I was a full-time scholarship student at NYU. I enjoyed traveling, reading, writing, cooking, spending time in community organizing spaces and quality time outdoors which wasn’t afforded to me during my upbringing. Like many other poor / working-class scholarship students, I have been financially independent from a young age and spent years laboring tirelessly to provide for myself. This past summer, when my lungs worsened, I had no choice but to part ways with my career and academic life, in addition to all of my hobbies and interests. Only weeks before my 20th birthday this past August, I underwent a risky lung procedure unsure if I’d make it out alive, which led to the final diagnosis of chronic hypersensitivity pneumonitis. Previously, I have seen several doctors that have brushed off my lung condition as asthma since my onset due to young age; one year later, after building a competent care team of specialists, I finally received an answer but it was only the beginning of an excruciating & long medical / financial journey. My life has completely altered since my diagnosis as I navigate a complex and cruel healthcare system, in addition to managing a complex disease without a support system.

If you are unable to offer any funds but are able to offer other services / resources in the NYC area that could benefit my health and / or quality of life materially, including but not limited to accessing rent-stabilized / affordable housing (my biggest expense $$$), pleasurable hobbies / experiences / activities, hot meals, rides to appointments, personal care maintenance (e.g. hair services), healing services, remote writing/learning experiences, letter buddy, PASC/LC/ILD support group, etc. please reach out and let me know [ writetohafiza @ proton . me ]. I appreciate any support and services that you are able to offer that could improve my quality of life drastically.

The following is a non-comprehensive list of expenses I incur as a disabled ILD/PASC patient and need for my survival and after:

rent;

prepared meals + grocery delivery;

out-of-pocket healthcare expenses;

medications, mobility aids, clean air technology, assistive equipment & technology;

travel to & from long-distance appointments;

pet expenses;

utilities + bills;

household expenses;

caretaker expenses as needed;

personal care items;

psychotherapy;

medical emergencies;

quality of life activities, as prescribed to my treatment plan by my neuropsychologist;

end-of-life / funeral arrangement planning.

I rely on your support to my survival fund as I have exhausted all financial resources available to me and am unable to labor. I rely on public assistance including SNAP + Medicaid and have been reliant on it for my whole life. I’m in the review process for disability benefits (which is lengthy with a low allotment, in addition to age/work history as the primary factor usually unfavorable towards young adults). I am poor, disabled, young and unable to provide for myself as my condition is terminal and severely limits my ability to labor. Unfortunately, I have no financial support from anyone in my life and no means of survival. I will need long-term financial support from my community for the time I have left. I am creating this survival fund out of necessity, as it’s important my survival needs are met so I can steer my focus on quality of life / advanced care planning.

Thank you for taking the time to read my story & supporting my journey in battling PASC and ILD.

In solidarity,

Hafiza & friends