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Abby

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 My name is Abby. I am 16 years old and going into junior year of high school (2020-2021). I swam competitively year-round for 8 years and I have been horseback riding for the past 4 years. I have 3 cats (Polo, Ralph, and Lauren) and I go to a cyber/charter school. 

 

 In 2014 I was diagnosed with Pars Planitis (Intermediate Uveitis) in both eyes. In 2020 I have been diagnosed with Anterior Uveitis as well as a Posterior Subcapsular Cataract in my right eye. 

 

 In 2014, I was walking down my elementary school hallway and noticed black dots in my field of vision that it seemed none of my friends had. I told my mom and she called my pediatrician who referred me to a pediatric ophthalmologist. We went there within the week, got my eyes dilated, scans taken, and the doctor came in. He did not know what he was looking at and immediately referred me to a retinal specialist. I was then diagnosed with pars planitis.

 

 The first medicine I was put on was prednisolone eye drops twice a day for a month in 2015. Those helped for about 6 months because my inflammation wasn't too bad. During the summer of 2017, the inflammation and floaters were impacting my vision so I had to receive my first posterior sub-tenon injection in my right eye. This was an injection of steroids into the tissues/muscles surrounding my eye. This injection worked very well for about 6 months. Then I received another which only worked for 4 months. Another that helped for 3 months. Then 2 months. Then for 1 month. Then barely a week. This is when we decided I needed a more consistent medication plan. I was then switched to oral prednisone for 2 weeks in 2019. These helped clear up my floaters for a short time but caused many side effects. Since I was only a teenager, continuing long term steroids could be very detrimental to my health so those were stopped. I then started an oral methotrexate. I tried this for about 3 months and then moved to subcutaneous methotrexate injections weekly. I stopped methotrexate in 2020 because of the lack of results we obtained from it. I started Humira in early 2020 to try to treat the uveitis. I have been on it for 6 months with no improvement. I also received an intravitreal steroid injection in my right eye in early 2020. This caused legal blindness in my right eye for two weeks and then improved vision for a week then back to normal. I shortly started tacrolimus but had an adverse reaction. I am currently on Humira once a week, trying to come up with a new plan for treating my aggressive inflammation. I was on prednisolone drops every 2 hours for 2 weeks in 2020 for my Anterior Uveitis. These drops cleared it up. 

 

  


  

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How were you able to cope with your diagnosis?

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Coping with a diagnosis that could cause vision loss is very difficult. Especially for a 10-year-old. I had very good doctors who tried to break things down into smaller and more easily digestible terms for me. I also worked with my mom to create a negative reinforcement system. To alleviate the bad, we focused on the good. After a scary procedure I usually got ice cream, got to skip swim practice, and just watch a movie. I got out of school for these appointments when I was little and it was great. When you're young you try to ignore the scary and focus on the rewards you get for being brave. At 10, I HATED getting my blood drawn, getting a shot, anything that involved needles. But then when I was 14 needles no longer scared me. I was used to getting injections in my eye, including several IVs, and even laser eye surgery at one point (fixing a retinal tear). You learn to accept what they give you because as scary as an injection into your eye is, losing your vision is scarier. How I cope with the impending doom of losing my vision is just to not think about it. I'm a teen, I want to have fun so I try to avoid thinking about it but dedicate time to my doctor appointments to address the worry with my doctor. You have to learn to not let the fear consume you. Having a good support system, whether that be friends, teachers, parents, guidance counselors, or whatever, is super important.

What has been difficult since your diagnosis?

 The hardest part since my diagnosis is schoolwork. I have been (temporarily) legally blind in my right eye for most of my 10th-grade year. On top of that, I get horrible migraines from straining my left eye from trying to complete all my work. The MOST important thing about school that has got me through was my teachers. I am constantly in contact with all my teachers, through both emails and in person. I also have a 504. Don't be afraid to ask for help, extensions, excused assignments, more time, large print books, or anything else. Your teachers WANT you to succeed, so don't be afraid to ask for help.

 

 

What advice would you give to someone who is newly diagnosed or is struggling? 

 Some advice for anyone newly diagnosed or struggling is that you are not alone. I know every time I went to the eye doctor, I saw no one under the age of 50 and just felt so alone. Or when I got bad news and no one was there who understood, I felt so alone. But there is a whole community out there who is feeling the same things you just haven't found them yet. Another piece of advice I'll say is that people will NOT understand. Many people don't understand how you can't see but don't need glasses. If it's worth your time, take the time and explain it, spread the awareness of uveitis. Haters gonna hate but your diagnosis is real and you know that.

To find out more about Abby check out her instagram @abbyplic 

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