Following Will, our second UCLA student, Tia, lends us her voice in describing the challenges of living with and caring for psoriasis.
–Did you know about Psoriasis before you had it?–
I had no idea what psoriasis was! The first time I ever showed symptoms I just had one small spot, and my doctor thought it was just a dry patch.
I had no reason to believe I would ever have a dermatological problem; I’d never had dry or sensitive skin before.
So, the next time it happened I self-medicated using the same cream the doctor had prescribed me last time, but this spot was stubborn and wouldn’t go away. I noticed one more spot and they both were there for a long time, so I went to a doctor and that’s when I found out it was psoriasis. One of my best friends had heard of it, because Kim Kardashian has it… but that’s it.
–How has living with Psoriasis been?–
Having psoriasis has made my life significantly more difficult. For starters, it’s embarrassing; and I’m not someone who gets embarrassed easily! I’ve had to explain what it is to a lot of people. Treatment also sucks up a lot of my time. At first, doctors told me to put cream on every spot 2-3 times a day, and each application took between 10 and 20 minutes since the spots are all over my body. For a while, I also tried phototherapy, which was time consuming as well as costly. I had to find a way to get to a phototherapy center two or three times a week without my own car. Without traffic the closest center is about 12 minutes away, but with traffic it would take me up to an hour.
I also get really stressed about it, especially when its flaring up (which nowadays is all the time). My scalp basically sheds in class, and it gets incredibly itchy. It looks pretty gross so I try to do everything I can not to touch it or irritate it, but at a certain point there’s nothing I can do.
The daily struggles… With psoriasis, everyone can see it. People always ask me what it is, and it sucks cause I know it looks kinda gross. I always wonder if people think its something contagious. It is also SO ITCHY sometimes and it can be really distracting when I’m trying to do work – I find myself picking at my scalp instead. Its just really stressful. I get stressed thinking about it, and then I get stressed thinking about the fact that being stressed makes it worse. It’s a vicious cycle. I truly believe that if I were able to sleep more, worry less, and lead an overall healthier lifestyle, it would go away. But obviously that is not an option, so I just try my best to cope!
–What are some things you’ve tried or will try?–
- Gentle steroid creams
- More intense steroid creams paired with Vitamin D cream
(totally useless so i didn’t bother with it)
- Oral antibiotics while using a very strong steroid liquid (fluocinonide) on my scalp
- Fluocinonide was very effective, especially paired with coconut oil –
I covered my scalp in coconut oil, put on a shower cap to let it soak in for 5 minutes, then comb all of the flakes of skin off my scalp. Once done with that, I was supposed to put the fluocinonide on. (worked SO well, but stung a bit)
- Tanning beds – cleared spots a bit, but also really dried out my skin if i wasn’t careful
- Otezla – haven’t been on it long enough to know.
- Paleo – going to see if it makes a difference.
Tia has Psoriasis, and is part of a UCLA student community called “You Are Not Alone.” After reading her story, it’s easy to imagine being in her shoes. Trial after trial of testing what works and what doesn’t work, all to the extent of only managing her psoriasis rather than curing it or finding long-term solutions. With Autoimmunity still under-represented, under-served, and under-funded, Tia’s story is one shared by many.
At our Stanford Medicine X workshop, I highlighted these autoimmunity voices in order to pinpoint needs and find solutions. If you’d like to lend your voice to this cause by sharing your story, email DrBonnie360@gmail.com
Edited By: Tiffany Simms