My sister Melanie has the most beautiful blue eyes you have ever seen. They have blessed her with excellent vision and aided her keen observation of nature, people, places and art throughout her life. They have taken her on many journeys through the books she has always loved to read, and movies she has loved to watch. They have always made it possible for her to earn a living using her exceptional organizational and management skills. Until now.
Melanie was working in Nashville as a Facilities Clerk at Gibson Guitar’s corporate headquarters. She relied on her “baby blues” to manage the mail room, and oversee day to day office management. In October of 2017, Mel experienced a sudden and dramatic loss of vision. She tried stronger glasses, eye lubricating drops, adjusted lighting, increased the font size on her computer and still, it became increasingly difficult for her to see. She noticed difficulty reading signs on the side of the road, texts and emails from her beloved Skylar and family and friends. She sought help, first from her primary care doc, then an ophthalmologist who misdiagnosed her condition. Finally, she was was able to be seen by a retinal specialist at Vanderbilt who did extensive testing and imaging and determined an official diagnosis: Bilateral Pan-Uveitis with Cystoid Macular Edema.
– Uveitis is a general term describing a group of inflammatory diseases that produce swelling and destroy eye tissues. Uveitis is not limited to the uvea. These diseases also affect the lens, retina, optic nerve, and vitreous, producing reduced vision or blindness.
– Pan-Uveitis means that all three major parts of the eye- the front, middle and back – are affected. This is considered the most severe and highly recurrent form. It is also the most likely to cause blindness if left untreated.
– Bilateral means that this disease is affecting both of my sister’s eyes.
– Cystoid Macular Edema means that multiple cyst-like (cystoid) areas of fluid appear in the macula and cause retinal swelling.
Initially, Mel’s doctors prescribed high doses of steroids: oral steroids, steroid shots into her eyeballs and steroid eye drops. While on this high dose steroid regimen, she had a brief improvement in her vision, but as soon as the steroid treatment was finished, her eyesight worsened dramatically. Because Mel’s diagnostic tests ruled out the usual culprits for this disease, the doctors labeled it “idiopathic,” meaning they don’t really know the cause and assume that it is an auto-immune disease. In other words, her immune system is attacking her own eyes. Her doctors at Vanderbilt, decided the next course of treatment for her should be immunotherapy and they prescribed Cellcept, an immunosuppressant drug typically given to organ transplant recipients to prevent their body from rejecting the organ. In Mel’s case the doctors hope it will somehow prevent her body from “attacking” her eyes.
Unfortunately, the Cellcept has a litany of dangerous side effects, including but not limited to liver and kidney failure as well as cancer. For this reason, Melanie must have blood work done every 4 to 6 weeks. The irony of this is that, in the process of her diagnosis, her doctors marveled at her overall physical health. They said she was in great shape and had the health of someone ten years her junior. Ironically, it seems that the treatment that could save her eyesight, may harm her body.
A few weeks ago, she resigned from her job in Nashville and moved to her hometown near Orlando to be close to her daughter, Skylar, other family and close friends. The stress of this disease and its effects on her vision had begun to negatively impact her ability to do the computer and paper based reading her job at Gibson required. In addition, the frequent eye dilation, imaging and med-checks, along with the uncertainty and despair this diagnosis brings, have prompted her to return in search of support as she faces the unknown and seeks healing and restoration to her eyesight.
Her doctors at Vanderbilt have projected that this treatment may lead to remission in 6 to 12 months, IF it works at all. This means she is putting a dangerous drug in her system which may or may not have any benefits. In the hopes of finding an alternative with better outcomes, Melanie, my mom and I have been researching this insidious disease, available treatments and looking for the top specialists for a second opinion. Our research led us to Dr. Stephen Foster near Boston. He is considered the expert in Ocular Immunology and severe Uveitis treatment.
Looming over the many emotional and health hurdles Melanie faces, is the financial burden that this disease has placed and will continue to place on her. Melanie’s insurance does not cross state lines so, for the time being, until she can enroll in a Florida plan, she will have to continue her regular visits to Vanderbilt for check-ups, blood work, and prescription maintenance. It also will not cover her getting a second opinion by Dr. Foster. Until Melanie determines if there is another treatment option for her, she needs to fly back and forth to Vanderbilt every four to six weeks to continue her current treatment plan. In the meantime she will have to pay out of pocket for an initial consultation with Dr. Foster. We anticipate that this trip, consultation, and testing will cost Melanie over $2000. Her travel back and forth to Nashville in the meantime will cost between $200 and $600 round trip, each visit. Over the next year, we anticipate a minimum of $8000 in medical expenses not including any forthcoming treatment or therapy that may be prescribed by Dr. Foster. It also does not include her regular cost of living which, in the event of flare-ups and relapses, will be difficult for her to sustain due to interrupted work or difficulty in finding living-wage employment with her new limitations.
We humbly ask for you to become an ally in our family’s fight to get Mel’s eyes the best possible evaluation and treatment and save her eyesight. We are grateful for your support (financial, emotional, and spiritual), as we help Mel navigate this process. Initially, we are setting a short term Go Fund Me goal of $8000 to get through these next financial obstacles. We ask also for your prayers and healing thoughts that Mel goes into remission soon so that she can feel more confident in her future self-sufficiency. Right now, Mel still has her sight. While flare ups sometimes happen, she is thankfully, able to see, to drive and to read with the aid of strong glasses, large font, adjusted lighting, etc. We are hoping Dr. Foster will be able to stem the degeneration of her vision and perhaps even restore her to perfect vision.
Thank you for any help you can provide to my sister. No donation is too small and no prayer too short. I would be grateful if you would please share this fundraiser on social media or through e-mail, if you are comfortable, in order to help us get the word out and meet our goal.