Living with Solar Urticaria
Yes, being allergic to the sun is actually a thing!
I developed solar urticaria in elementary school, and have had a lifetime full of the unfortunate symptoms of painful, itchy hives everytime I go out in the sun for longer than a few minutes. For anyone who has never experienced hives, you essentially get raised, splotchy welts or a rash on the skin that are extremely itchy with a burning sensation. They are usually due to some type of trigger and can go away when no longer exposed (normally a few hours), or by taking an ice cold bath.
Since solar urticaria is one of the rarest forms of urticaria (only about 650 documented cases), getting a diagnosis from a doctor 20 years ago (wow, am I really that old?!) was an extremely difficult task. You can only imagine the amount of gaslighting and being told that there is no such thing as being allergic to the sun. For further education on rare urticarias — the following types also exist: 1) aquagenic urticaria (being allergic to water), 2) heat urticaria (being allergic to warmth/heat), 3) cholinergic urticaria (being allergic to a raised body temperature - normally due to sweating, exercise, etc.), 4) cold urticaria (being allergic to cold temperatures), 5) vibration urticaria (being allergic to vibrations on the skin), and 6) urticaria factitia (being allergic to any type of rubbing or scratching of the skin surface). Sending solidarity to my fellow rare urticaria survivors!
After cycling through handfuls of doctors, endless allergy and bloodwork tests, and feeling defeated — my mom researched tirelessly and found a highly respected allergy specialist that was able to confirm and diagnose me with solar urticaria. However, the recommendations given will make you all laugh — cover up completely when going out in the sun, wear a strong sunscreen, and take 3x the recommended daily amount of Zyrtec. I followed his recommendations, but the symptoms never subsided much. It was quite funny having this condition in the age of the Twilight fandom, with many comparisons to being a vampire. However during the time, I was quite miserable with having to live with the daily pain of participating in field trips, mandatory P.E./sports, outdoor birthday parties, and beach days. I am deeply grateful for all of my close friends and family who accomodated me throughout my life.
Even revisiting a new respected allergy specialist a few years ago (more than a decade later) the advice given was the exact same. I was actually told by this new Santa Monica specialist to keep traveling and stick my hand out of the window as the intensity of a reaction is dependant on the latitude/longitude, not necessarily temperatures or UV count. You can imagine my face when he said, “Once you find a city you don’t get a reaction in, move there”! I asked if there were any new developments of a cure being developed, but the options were either a) phototherapy (essentially exposure therapy to UV light) where you could get cured but also have an extremely high chance of developing skin cancer, or b) a $5,000 shot that would have to get injected every two weeks (out of pocket). I went home that day with zero hope for there ever being an accessible cure, as it impacts too few patients to get enough funding as opposed to something like cancer.
Last year, I created a TikTok account for this blog and decided to make a video and see if I could find any of the very few people in the world with solar urticaria. I had very low expectations of getting any views or traction (I’ve been stuck in 200 view jail since I made my account lol) - but over time, I have received several comments of people’s experiences with it. It turns out that the same $5,000 shot from a few years ago is called Xolair (or Omalizumab) and has become more accessible since then. I was so ecstatic to see that the majority of people who have tried Xolair were able to cure their solar urticaria! I have since called my insurance company and the generic version of the shot should be reimbursable, so I have plans to start my Xolair journey in 2025 (as long as all goes smoothly with getting it approved by a doctor).
With 20+ years of never being able to fully enjoy myself outside, or being able to sun tan, or even just driving without hives forming on my hands and chest — I am finally optimistic that I may be able to experience having fun in the sun (or at least a less painful time). When I start my Xolair journey I will definitely write another blog on my experience (especially since I am scared of needles and faint everytime I get a blood panel done lol). If you have experience with solar urticaria, Xolair, or another rare form of urticaria I would love for you to comment! XO
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