My Experience with Uveitis
I came across this post the other day and I thought it summarized the frustrations of dealing with a chronic illness well.
“I don’t think healthy/not-chronically-ill people realize how many years of your life can disappear while you’re waiting to see a new doctor, waiting for test results, waiting for insurance approval, waiting for a new treatment to work and another and another forever.”
I’m sure everyone here from both the medical and patient sides have dealt with all of these issues at some point while trying to treat their conditions.
I had never had an eye exam growing up. As a kid I did have severe migraines with aura, losing half of my vision as a warning before a headache but it always returned to normal. Since then, I have dealt with so many seemly random medical problems ever since, from vertigo and headaches to joint pain and swelling. Then in my 20’s I woke up with a giant black spot floating around in my left eye. My husband, a resident physician at the time, was worried and told me to the ER. However, I thought a more reasonable option was to get it checked out at Target optical center and maybe go shopping too. The optometrist, at Target, said my vision was fine and I just had a floater. The symptoms worsened, and even started to affect my work in a transgenic research lab where I kept trying to clean the microscope which seemed hazy, dirty and out of focus.
I didn’t realize that the floaters, black spots, had smokey hazy vision were a result of my own vision falling apart from undiagnosed uveitis. Several months later, my husband worked with a retinal specialist so he asked if he would see me. I knew it was not good when he pulled out some goggles to get a better look. He diagnosed me with uveitis and retinal vasculitis and told me he was concerned I may have multiple sclerosis. He sent me for a chest xray, tons of bloodwork and a brain MRI. When steroid eye drops didn’t help, he referred me up to MERSI to see Dr. Foster who got me in that same day. Dr. Foster started me on an initial treatment regimen and the uveitis improved and remained inactive for a few years afterwards. During this period of time, I was able to have our beautiful daughter Nora.
Unfortunately, my uveitis returned in 2016 and since then I have felt like one of Dr. Anesi’s most high maintenance patients, not by choice. And also unfortunately, my symptoms are not isolated to my eyes and most likely part of a systemic autoimmune disease. Thankfully my vision has remained good but in addition to the eye symptoms, I have dealt with multiple debilitating episodes of neurological symptoms that have at times, left me confused and unable to speak or walk, symptoms the doctors and staff at MERSI have seen in person. I have had a heart ablation surgery, now have hearing aids due to hearing loss and a long long list of other problems. The symptoms have led to several hospitalizations and visits to numerous subspecialists in Rhode Island, Boston, at NYU and this year went out to the Cleveland Clinic. A variety of underlying diagnoses have been considered and are now narrowed down to sarcoidosis, Behcets disease, MS or an undiagnosable vasculitis.
At many visits with other specialists, it has been clear that the specialists did not even understand the condition or have the experience to treat my condition. Even worse, many times I have felt unheard and dismissed.
However, my experience here has been very different. Because of the research done and training provided by OIUF I know that I am getting the best care possible. Although it has been difficult, everyone has worked tirelessly to find a medication that will work to get me off steroids and control the underlying autoimmune condition. We have tried antivirals, methotrexate, cellcept, Imuran, Rituxan, Acthar, Actemra, an Ozurdex eye implant, IVIg and SCIg, Humira, and Xeljanz, some of these twice or more. So far each one has had limited success or caused crazy side effects or allergic reactions. At each step the team here has been able to help deal with the side effects or find the next option. When the Ozurdex implant caused high eye pressure and I was, of course, allergic to most of the drops, Dr. Anesi fixed it with laser surgery. When I went 4 years with unrelenting eye pain, Dr. Anesi was willing to try a trochlear steroid injection that he had only done once before. This has been the most effective treatment for my eye pain and has been honestly life changing. All of the doctors here have always seemed ahead of the curve in their understanding of uveitis and its association with other systemic diseases as compared to multiple other specialists I have seen.
Even more important than the medical training they are getting, I also know that the fellows are getting experience in how to be thorough, and really care for their patients. Unlike so many of the other specialists Dr. Anesi and the fellows have always made me feel heard and validated. They have tried to address my symptoms and concerns, even when they are outside of the eye, something I appreciate more than I can put into words.
Over the past 7 years Dr. Foster, Dr. Anesi, Frances, the nurses, techs and fellows trained through the ocular immunology and uveitis foundation have gone above and beyond to help me and work with me despite my indecisive tendencies and apprehension about treatments. Have I mentioned that I tried these treatments despite a significant needle phobia? They have helped arrange infusions, deal with insurance companies, spoken with other specialists, and have tolerated me asking 100 questions and to be tested for random rare bacterial strains. One day after an appointment I went home with a fresh lobster, how can you beat that?!
It has been 12 years since I was first diagnosed with uveitis. I am honestly not sure what shape my eyes, or the rest me, would be in if I did not finally trust their recommendations for treatment. I’m currently attempting a Rituxan/cellcept combo in the hopes to get off steroids without my condition flaring again. If it doesn’t work we will keep moving on to the next treatment that might.
My family has participated in this fundraiser for the ocular immunology and uveitis foundation since 2018, I want to thank everyone who donated and I wanted to walk again this year because, unlike this time last year, I am in the condition to be able to. I want to bring awareness to these conditions and others dealing with them and help fund research supporting new treatments and information. Thank you to my family, friends and husband who have helped so much during times of poor health.
To other patients in a similar situation – please don’t give up. Become educated about your conditions and advocate for yourself in the medical system.
To the physicians and fellows, please keep learning, researching and collaborating with other specialties, continue to listen to your patients and THANK YOU for all of your help!
Marissa F. presented at walk for vision 2024
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