A safe home for Keeya
Donation protected
Mast cell disease has caused me to lose many of my most cherished activities, my dream of starting a family, and my career aspirations. I don’t want to lose my home, too.
In December 2015, at age 29, I was diagnosed with mast cell activation syndrome (MCAS). Basically, my body is constantly having an allergic reaction. Many foods, fragrances, and activities can trigger life-threatening mast cell reactions, including anaphylaxis and organ damage. Since 2015, I have had two surgeries, two hospitalizations, and dozens of emergency room visits. Most recently, I suffered a spontaneous cerebrospinal fluid leak and damage to my right kidney. I rely on daily medication to keep me alive. Some days, I struggle to eat and walk.
Because of my severe reactions to fragrances, my world has shrunk. I spend most of my time in solitary confinement to protect my health. I can’t go to shopping malls, theaters, concerts, or restaurants. Aside from the days I’m pumped full of prednisone, I am limited to about 10 “safe” buildings with good air quality. Even deodorant can trigger severe reactions in confined spaces, so I rarely have visitors at my condo. Because of MCAS, I spend most holidays alone.
Throughout it all, I have clung to my financial independence. I fought for ADA accommodations (an enclosed office with a HEPA filter) to keep my full-time job, because I know it is my lifeline. I ration my vacation/sick time for my worst days, and power through the nausea, fainting, and pain. I cannot afford to take time off for vacations (or in my case, staycations) to rest. Despite a job and health insurance, I still have $7,000 in medical debt.
This spring, my home, which I’ve owned for eight years, became unsafe. Fragrance and volatile organic compounds (VOCs) from my neighbor’s new ventless dryer began seeping into my 760-square-foot condo, causing migraines, fevers, throat swelling, dizziness, vomiting, and kidney inflammation. The laundry fumes are entering my condo through a shared bathroom vent and gaps in the shared walls. The neighbor refuses to keep their bathroom fan on to prevent the fumes from entering my condo. The neighbor has not sealed gaps in their walls, forcing me to try to seal my condo at my own expense. Additionally, my neighbor’s air conditioner is draining fragrant, high VOC condensation in an open drain in my condo.
For the past two months, I have struggled to stay safe and have constantly worried about becoming homeless. When the chemicals are strongest, I am confined to my bedroom with the door sealed and two HEPA filters running. I often skip dinner because my kitchen is not safe. My neighbor's air conditioner drainage prevents me from using my own air conditioner, even though heat is a major MCAS trigger. Due to MCAS, I cannot safely stay at a hotel or a friend’s house. The fumes are impacting my ability to eat, sleep, and work. I am temporarily taking steroids to try to avoid hospitalizations from the fumes, but that has its own side effects.
I have attempted to resolve the issue myself by requesting a FHA reasonable accommodation from my condo association. Unfortunately, association did not even inspect my vents until six weeks after my request, despite having a daily on-site maintenance staff. While I have filed a formal FHA complaint for lack of action by the condo association, I have been forced to hire an attorney in order to make my home safe as quickly as possible. Unfortunately, I do not qualify for legal aid, because I have a full-time job. At the same time, I also cannot afford to move to a safer home.
Taking legal action is imperative to my health. You can help.
Your donation will help me pay for:
· Legal fees to address the chemical fumes from neighbor
· Health and safety condo improvements, including a new air conditioner and insulation
· Two medical grade HEPA air purifiers
· Ongoing medical and travel expenses to see specialists
In 2015, I was lucky to be diagnosed and treated by a mast cell specialist at the University of Minnesota. Unfortunately, the specialist moved to New York in 2017 and no longer accepts health insurance. Today, U of M and Mayo Clinic refuse to treat MCAS. Meanwhile, my right kidney continues to shrink due to complications from mast cell disease, exacerbated by unsafe living conditions. Even though I have health insurance and better treatments exist, I cannot access affordable medical care for my disease.
When I am not fighting my disease or working, I write humorous stories and jokes about chronic illness, disability, and mast cell disease. My advocacy work has helped others with MCAS get diagnosed and treated. I hope to write a book to entertain and help others with chronic illness.
Every day is fight to survive. Mast cell disease is a never-ending physical, emotional, medical, financial, and legal battle. Unfortunately, this fight has become too big for me to conquer on my own. I need and wholeheartedly appreciate your financial help.
In December 2015, at age 29, I was diagnosed with mast cell activation syndrome (MCAS). Basically, my body is constantly having an allergic reaction. Many foods, fragrances, and activities can trigger life-threatening mast cell reactions, including anaphylaxis and organ damage. Since 2015, I have had two surgeries, two hospitalizations, and dozens of emergency room visits. Most recently, I suffered a spontaneous cerebrospinal fluid leak and damage to my right kidney. I rely on daily medication to keep me alive. Some days, I struggle to eat and walk.
Because of my severe reactions to fragrances, my world has shrunk. I spend most of my time in solitary confinement to protect my health. I can’t go to shopping malls, theaters, concerts, or restaurants. Aside from the days I’m pumped full of prednisone, I am limited to about 10 “safe” buildings with good air quality. Even deodorant can trigger severe reactions in confined spaces, so I rarely have visitors at my condo. Because of MCAS, I spend most holidays alone.
Throughout it all, I have clung to my financial independence. I fought for ADA accommodations (an enclosed office with a HEPA filter) to keep my full-time job, because I know it is my lifeline. I ration my vacation/sick time for my worst days, and power through the nausea, fainting, and pain. I cannot afford to take time off for vacations (or in my case, staycations) to rest. Despite a job and health insurance, I still have $7,000 in medical debt.
This spring, my home, which I’ve owned for eight years, became unsafe. Fragrance and volatile organic compounds (VOCs) from my neighbor’s new ventless dryer began seeping into my 760-square-foot condo, causing migraines, fevers, throat swelling, dizziness, vomiting, and kidney inflammation. The laundry fumes are entering my condo through a shared bathroom vent and gaps in the shared walls. The neighbor refuses to keep their bathroom fan on to prevent the fumes from entering my condo. The neighbor has not sealed gaps in their walls, forcing me to try to seal my condo at my own expense. Additionally, my neighbor’s air conditioner is draining fragrant, high VOC condensation in an open drain in my condo.
For the past two months, I have struggled to stay safe and have constantly worried about becoming homeless. When the chemicals are strongest, I am confined to my bedroom with the door sealed and two HEPA filters running. I often skip dinner because my kitchen is not safe. My neighbor's air conditioner drainage prevents me from using my own air conditioner, even though heat is a major MCAS trigger. Due to MCAS, I cannot safely stay at a hotel or a friend’s house. The fumes are impacting my ability to eat, sleep, and work. I am temporarily taking steroids to try to avoid hospitalizations from the fumes, but that has its own side effects.
I have attempted to resolve the issue myself by requesting a FHA reasonable accommodation from my condo association. Unfortunately, association did not even inspect my vents until six weeks after my request, despite having a daily on-site maintenance staff. While I have filed a formal FHA complaint for lack of action by the condo association, I have been forced to hire an attorney in order to make my home safe as quickly as possible. Unfortunately, I do not qualify for legal aid, because I have a full-time job. At the same time, I also cannot afford to move to a safer home.
Taking legal action is imperative to my health. You can help.
Your donation will help me pay for:
· Legal fees to address the chemical fumes from neighbor
· Health and safety condo improvements, including a new air conditioner and insulation
· Two medical grade HEPA air purifiers
· Ongoing medical and travel expenses to see specialists
In 2015, I was lucky to be diagnosed and treated by a mast cell specialist at the University of Minnesota. Unfortunately, the specialist moved to New York in 2017 and no longer accepts health insurance. Today, U of M and Mayo Clinic refuse to treat MCAS. Meanwhile, my right kidney continues to shrink due to complications from mast cell disease, exacerbated by unsafe living conditions. Even though I have health insurance and better treatments exist, I cannot access affordable medical care for my disease.
When I am not fighting my disease or working, I write humorous stories and jokes about chronic illness, disability, and mast cell disease. My advocacy work has helped others with MCAS get diagnosed and treated. I hope to write a book to entertain and help others with chronic illness.
Every day is fight to survive. Mast cell disease is a never-ending physical, emotional, medical, financial, and legal battle. Unfortunately, this fight has become too big for me to conquer on my own. I need and wholeheartedly appreciate your financial help.
Organizer
Keeya Steel
Organizer
Minneapolis, MN
