Vanessa Garrett, a woman with Crohn’s disease, common variable immunodeficiency (CVID), and Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), is grateful for her life despite her circumstances.
Her family is supportive, loving, and cares for her financial and emotional needs. But that doesn’t mean it’s easy. She chronicles her experiences on a Go Fund Me page that she set up in an attempt to raise money to ease the financial strain that her medical expenses place on her family.
Adjusting to a New “Normal”
It’s been ten years since Garrett first felt symptoms, and ever since, her life has been drastically different than the one that she knew for the first 26 years of her life—she used to be a homeowner, car owner, she was well-traveled, social, and even had an IRA before she fell ill.
But like many people with rare diseases, she never saw it coming.
Her first symptom was drastic weight loss—nothing she ate or drank would stick with her body. Then came edema, hair loss, fatigue, weakness, and severe abdominal and rectal pain that would leave her in tears curled up in a ball on the bathroom floor at work.
Continue to Work With Your Doctor to Find a Diagnosis
For two years, she suffered tremendously because the doctors couldn’t decide what was ailing her and dismissed her because of her young age. Out of disparity, Garrett tried every unconventional, expensive, out-of-the-box medication she could get her hands on. But nothing helped, until a hospitalization that diagnosed and treated her for Crohn’s disease. This helped, but in addition to her Crohn’s diagnosis, other symptoms kept her sick all the time.
Two years after being diagnosed with Crohn’s, she was diagnosed with CVID and HLRCC. And currently, she’s enrolled in two National Institute of Health (NIH) studies for her HLRCC, which, fortunately, pays for airfare and part of the hotel, as well as scans and blood work, but does not cover the remainder of a hotel, shuttles, tips, food and transportation. Not to mention, the time that her mother must take off of work.
It’s Okay to Ask for Help
Her Go Fund Me page is a cry for help. Like others who live with rare diseases, she’s unable to receive government aid for medical necessity. She claims this is because she doesn’t have children, but is quick to add that she’s unable to bear children because of her genetic disorders. She’s unable to work because she’s untreated and, again, like many other patients, her medications are expensive. As in, $8,000 a month expensive. She’s been denied disability three times and sees eight different specialists, three of which are not covered by insurance. The list goes on.
But through it all, despite the new and unexpected expenses, she is “eternally grateful” and knows “everything will be okay.” Like Garrett, it’s important to reach out for help when you need it and know that others are open to hearing and supporting your journey.
As of now, Garrett has raised $2,400. To stay up-to date with her experiences or make a donation towards her medical expenses on her GoFundMe page.
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