Together for Ashley: Navigating Complex Health Issues
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Hello everyone,
I’m reaching out to share my story and ask for your support as I navigate some challenging health issues; I’ve been battling Idiopathic Anaphylaxis with other immune insufficiency. While I’ve experienced symptoms since 2021, my condition became severe in October 2024. I appreciate you taking the time to read my story!
My Journey
Though it may never be definitively linked, many of my symptoms started after receiving the COVID vaccine in 2021. I began experiencing frequent low-grade fevers, blistering, cellulitis, and extreme fatigue. After a diagnosis of shingles, I returned to work as an EMT, but following another bout of COVID, I developed cardiac issues that left me disabled for several months.
During that time, my cardiologist and primary care provider conducted several tests, ultimately concluding on an unspecified tachycardia and hypotension, and eventually Dysautonomia. After starting medication, I adjusted to how my body was functioning and managed to return to work. However, persistent fatigue and other debilitating symptoms led my healthcare team to recommend immune system testing with an immunologist.
The results showed that my immunity to varicella (the virus that causes chickenpox and shingles), tetanus, and 16 pneumococcal disease variants was nonexistent. I was only able to receive the tetanus and pneumonia vaccines, and I was told that a shingles vaccine would likely put me in the hospital. I was advised to “find a less stressful job”, and ultimately found a job teaching martial arts.
In March of last year, after leaving my job in EMS, I thought I had dislocated my patella while working at my martial arts job. Unfortunately, after failing physical therapy and continued knee instability, I was told I needed major surgery on my knee to clear out damaged cartilage, remove a floating fragment of my patella, and receive a donor graft for my new MPFL ligament.
The physical and emotional stress from the surgery, combined with my ongoing health complications, hit me hard in October when I woke up with hives covering my chest and face with no explanation. Over the next week, I dealt with random rashes and hives with no relief. After seeing several specialists, I was advised to return to immunology, which diagnosed my initial immune insufficiency. Since then, my quality of life has taken a significant downturn.
From being able to hold a full time job and school to feeling like I’ve hit a brick wall after lights daily activities or no activity is an immense loss, and losing my ability to function outside of daily routines has taken a toll on my mental health. I’ve always been the one to check in on others, offering support and a listening ear, and it’s taken months of encouragement, therapy, and support from my loved ones for me to realize that I need to ask for help for myself. I’m actively grieving the body I once had while trying to love and support myself the way I am now.
Understanding My Conditions
I experience debilitating symptoms from Idiopathic Anaphylaxis, which can trigger sudden and severe allergic reactions without warning. Since December, I’ve had three emergency room visits due to these anaphylactic reactions. Additionally, I’m being tested for Mast Cell Activation Syndrome (MCAS), a condition where my body’s mast cells (a type of white blood cell) release too many chemicals like histamine. This leads to a wide range of symptoms that can affect multiple body systems, including:
Skin: Flushing, hives, and rashes, especially when exposed to sunlight or any light as well as sudden temperature changes.
Gastrointestinal System: Extreme bloating, nausea, and other allergic reactions, which have forced me to cut out many foods from my diet.
Respiratory System: Shortness of breath, wheezing, and throat swelling.
Cardiovascular System: Rapid heart rate, low blood pressure, and fainting.
Neurological Symptoms: Fatigue, headaches, brain fog, and anxiety.
Any mast cell disorder diagnosis takes an average of three years to diagnose due diagnostic criteria that is time sensitive based on symptoms with a wide array of symptoms from patient to patient.
Current Treatment
My care team is working tirelessly to get me into either Duke or Vanderbilt’s research hospitals for access to specialized providers and advanced treatments. My current treatment includes bi-monthly Xolair injections to manage anaphylaxis and chronic hives. Unfortunately, my insurance is not currently covering Xolair, and I’m working closely with my physician, who is advocating for this essential medication as part of an appeal process with my insurance.
In addition to Xolair, I’m on several other mast cell stabilizing medications and daily over the counter medications that are quite expensive and/or must be compounded at specialty pharmacies that don’t accept insurance. The financial burden of these medications is overwhelming when I am unable to work. The maximum out-of-pocket cost for Xolair is $1,500 a dose. My immunologist is allowing me to use sample doses for now, and I can’t apply for a grant that would cover my yearly cost until the insurance appeal is settled.
I’m also in the process of applying for disability benefits through the government, but the average wait time for approval is three to five years for someone with my conditions. Like Xolair, benefits are often rejected several times before being granted, which adds to the stress during this challenging time.
How You Can Help
I am beyond grateful for my family, friends, and Justin (who has been incredibly supportive while we take on this mountain together) for providing their love and support since symptoms began. Unfortunately, Justin and I are struggling to make ends meet as I continue to be treated and wait to be accepted into a university research hospital. This is the estimated cost breakdown per month:
Rent and Monthly Bills: Approximately $2,000 to ensure my bills are paid; health insurance, rent, car insurance, utilities, etc.
Medical Expenses: Around $200 in average monthly co-payments to see my specialists.
Prescriptions and Supplements: About $250 for non-specialty medications and supplements.
Specialty Mast Cell Medications: Approximately $200 for compounded medications that are often in shortage.
Therapy: My therapist has been gracious enough to waive her fees while I am being treated!
I’ve also created an Amazon list titled "Ashley’s Health Essentials," where you can purchase the supplements, meal replacements, specialized body care products, and other items I use daily.
Ashley’s Health Essentials - Amazon Gift List - https://www.amazon.com/registries/gl/guest-view/398I3JRC9AIO7
Anything else you choose to send through Amazon, family, or Justin is also greatly appreciated, though I kindly ask that you avoid sending anything scented, like candles, essential oils, lotions, etc., or foods not on the list as these can trigger my symptoms.
Additionally, I will be posting updates as I receive more information about seeing providers at research hospitals and the status of my insurance appeal for Xolair. Links to mast cell disorder organizations are also provided so you can learn more about these complex illnesses, the immense resources needed for those affected, and the critical need for funding of mast cell research.
Your generous donations will directly support my journey toward better health and stability during this difficult time. Every contribution, no matter the size, will make a significant impact.
Thank you for your kindness and support. Together, we can help me access the care I need and improve my quality of life.
With gratitude,
Ashley
Organizer
Ashley Bunney
Organizer
Rock Hill, SC