TL;DR

I am asking for urgent help staying housed, keeping my electricity connected, reaching lifesaving medical appointments, and affording essential treatments while I wait for disability benefits.

I moved to Walterboro to access specialized care at MUSC for Dermatomyositis (DM), Common Variable Immune Deficiency (CVID), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). These disabling conditions require frequent appointments, lifelong IVIG, ongoing testing, and medications I cannot safely go without. I am unable to work, and because the disability process may take up to 18 months, my housing, utilities, transportation, medical care, and basic needs are at immediate risk.

If you can donate, please do so today. If you cannot give, sharing this fundraiser could help me reach someone who can.

My Story

In February 2026, I moved to Walterboro because staying within reach of highly specialized medical care at the Medical University of South Carolina in Charleston had become a matter of survival.

I did not move for a new job, a better home, or a fresh start. I moved because my health was deteriorating, my medical needs were becoming increasingly complex, and MUSC offered access to specialists capable of understanding and treating conditions that affect nearly every system in my body.

Despite doing everything I can to remain close to treatment, I am struggling to afford the basic necessities that make continuing it possible. I could lose access to appointments and infusions, be unable to manage my medical care safely, and have no protection from the heat and UV exposure that can make me dangerously ill.

I live with dermatomyositis, common variable immune deficiency (CVID), hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). Together, these conditions affect my immune system, muscles, connective tissue, circulation, heart rate, blood pressure, temperature regulation, and ability to tolerate ordinary environmental exposure.

My care involves a growing team of more than a dozen specialists. In a single month, I may have as many as 25 appointments, procedures, tests, and infusions. I receive monthly IVIG for immune replacement and immune modulation. Because of my immune deficiency, some level of IVIG is expected to continue for the rest of my life. I also rely on medications I cannot safely go without.

I have undergone multiple surgeries and require extensive whole-body imaging because dermatomyositis carries an increased risk of certain cancers.

These illnesses affect nearly every part of my daily life.

UV exposure and heat can cause severe physical reactions. I cannot safely step outside during daylight without covering myself from head to toe and carrying an umbrella, even just to check the mail. South Carolina often remains so hot after sunset that I cannot safely walk my dogs at night.

POTS makes standing and physical activity difficult and can cause dizziness, rapid heart rate, weakness, and loss of consciousness. MCAS can cause sudden allergic reactions and requires biologic treatment and emergency rescue medications. hEDS causes chronic pain, joint instability, and complications that affect how my body tolerates everyday activity, medical procedures, and surgery.

A recent venous reflux study also found problems with blood flowing properly through the veins in my legs. When the valves inside these veins do not work effectively, blood can pool instead of returning normally toward the heart. This contributes to swelling, heaviness, pain, and difficulty remaining on my feet, further complicating the effects of POTS and my connective-tissue disorder.

I cannot safely use ordinary cardiovascular exercise to rebuild my strength because exertion itself can trigger severe overheating, profound weakness, dizziness, intense skin burning, and other serious symptoms. Everyday tasks must be carefully timed, modified, or avoided completely. Things most people do without thinking, like washing dishes, can leave me unable to function.

One of the most serious problems currently affecting me is difficulty swallowing.

A speech-language pathologist has diagnosed both oropharyngeal and esophageal dysphagia. This means I have difficulty both initiating a swallow and moving food and liquid through my esophagus. I have also been diagnosed with muscle tension dysphonia, which affects my voice.

Every time I burp, stomach contents come back into my mouth. This is actual regurgitation, not occasional heartburn, and it happens every single time. My gastroenterologist recommended Reflux Gourmet, an alginate product made from seaweed that forms a temporary gel-like barrier on top of the stomach’s contents to help keep them from coming back up. Unfortunately, it is too expensive for me to use consistently.

Esophageal manometry also found esophagogastric junction outflow obstruction, or EGJOO. In simple terms, the opening between my esophagus and stomach may not be relaxing enough to allow food and liquids to pass normally. Combined with my swallowing difficulties and frequent regurgitation, this increases the risk that food, liquid, or stomach contents could enter my airway instead of traveling safely into my stomach.

My next step is a barium esophagram to determine whether it confirms the same obstruction. If it does, my gastroenterologist has offered Botox injections into the muscle at the bottom of my esophagus to help it relax and open more easily.

At the same time, after more than a year of advocating for appropriate treatment, my rheumatologist has finally ordered the IVIG dose used to treat dermatomyositis. Until now, the IVIG I received was dosed for immune deficiency, not at the level used to treat inflammatory muscle disease. I am hoping to receive the new dose at my next infusion in two weeks.

If I respond well, my doctors hope that approximately three rounds at the dermatomyositis dose may begin improving the muscle weakness contributing to my swallowing problems and choking. For the first time in a long time, I have a reason to hope that part of my condition may improve. I just have to remain stable enough to reach those treatments.

I also experience unpredictable medical crises, including choking, seizure episodes, and loss of consciousness. My doctors are still working to understand some of my most serious symptoms, which makes continuity of care critical.

Access to specialists means more than simply having appointments. It means having physicians who understand how these complicated conditions overlap, recognize dangerous complications, and know what to investigate when symptoms do not fit neatly into a single diagnosis. Without that expertise, serious problems can be missed until they become emergencies.

My health has made maintaining regular employment impossible. I have applied for disability benefits, but I have been told that, because of understaffing, the first phase of the process alone may take up to 18 months. My illnesses and limitations are extensively documented, and I believe I will qualify, but my housing, electricity, transportation, medical care, and basic living expenses cannot wait that long.

I know asking for financial help is a lot. If my disability claim is approved and I receive backpay, I am willing to repay the people who helped me wherever I am able. Right now, I simply need help surviving the wait.

I need reliable transportation to reach appointments at MUSC, many of which require a roughly 100-mile round trip. I need stable housing and uninterrupted electricity because air conditioning and protection from heat and UV exposure are medical necessities for me.

My home is where I recover from procedures, manage my medications and treatments, and remain within reach of the specialists overseeing my care. It is also home to my three cats and two dogs, including an elderly dog and a registered emotional-support animal.

I have done everything within my power to keep moving forward. I relocated to remain within reach of specialized care. I attend the appointments, undergo the procedures, biopsies, imaging, and laboratory testing, manage the medications, endure the infusions, and continue advocating for treatment even when I am exhausted.

What I cannot do by myself is make an 18-month financial gap disappear.

If you are able to donate, your contribution will help keep me housed, keep my electricity connected, keep my vehicle operational and fueled, and help pay for medications, treatments, medical supplies, and basic living expenses while I wait for disability.

If you cannot donate, sharing this fundraiser is also meaningful. A share may place my story in front of someone who can help.

I am not asking for comfort or an easy life. I am asking for the stability necessary to remain alive and in treatment long enough for that treatment to have a chance to work.

Please donate or share if you can. Every contribution helps me remain housed, protected from dangerous heat, able to reach MUSC, and connected to the medical care I cannot survive without.

Thank you for helping me keep going.