Teen with Uveitis Holds Fundraiser for NHS

In 2020, Lily Tyson, aged 12 at the time, was diagnosed with a rare chromosomal disorder called Turner syndrome. More recently, Lily began experiencing various eye issues: redness, pain, blurred vision. Yahoo! News reports that in 2022, Lily was diagnosed with her second rare condition called uveitis; this refers to inflammation in the uvea, or the middle layer of the eye. 

Since her Turner syndrome diagnosis, Lily has gotten involved in advocacy. In 2021, she ran 103 kilometers to raise Turner syndrome awareness and funds for the Turner Syndrome Support Society (TSSS). The next year, she walked up Mount Snowden, the highest mountain in Wales. 

Unfortunately, Lily’s medication that she uses to manage her uveitis has contributed to her growing fatigue and lowered energy levels. But that hasn’t stopped the vibrant 15-year-old from working to make a change. With the help of family and friends, she held a variety of fundraising endeavors—from sports events to bake sales—and raised more than £12,000 (approx. $14,486) for the TSSS. She is also joining research to help advance her local medical providers’ understanding of uveitis. 

Now Lily is holding another fundraiser; she aims to raise at least £500 (approx. $603) to be split between TSSS and the Manchester Royal Eye Hospital, the latter of which has been treating her uveitis. If you would like to contribute to Lily’s fundraising goal, you may donate here

What is Uveitis? 

As described above, uveitis refers to uveal inflammation, or inflammation in the middle layer of the eye. It may affect one or both eyes. Iritis, the most common form of uveitis, affects the front of the eye. Cyclitis affects the ciliary body; choroiditis the retina and optic nerve; and pan-uveitis all major parts of the eye. While uveitis can affect people of all ages, it is most common in those between ages 20-60. The cause of this inflammation is unclear in many cases. Potential causes may be eye injury or surgery, eye cancer, infection, autoimmune or inflammatory disorders, or toxins penetrating the eye. Symptoms may include:

  • Eye pain
  • Increased sensitivity to light
  • Blurred vision
  • “Floaters” in the field of vision
  • Eye redness
  • Vision loss 

Those experiencing the above symptoms should speak with an ophthalmologist as soon as possible. Treatment options may include eye drops, steroids, surgeries, or drugs targeted towards the underlying infection or immunological issue.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email