By Sabrina Skiles
I was a young girl in junior high school when the spots first started to appear on my body. So along with all the normal teenage pressures — algebra, mean girls, awkward phases, boys, homework, and curfews — I had red, flaky spots covering 90% of my body. The only thing that my family and I knew at the time was that psoriasis was a genetic, chronic autoimmune disease and that there was no cure. That was where our knowledge stopped.
So the next step was to learn more about psoriasis. I read everything I could get my hands on — books, research studies that were published online, patient stories, and support groups.
I wanted to make sure I was knowledgeable about the disease so I could ask my doctor the right questions. For me, those questions were:
- What new treatments can you tell me about?
- Are there organizations that I should reach out to for support in living with my psoriasis?
- What symptoms of psoriatic arthritis should I look for? How often should I get tested for psoriatic arthritis?
- Are there certain diets (gluten free, vegan, etc.) or lifestyle changes that might help?
- I’m concerned about biologics and their side effects. What would you suggest in place of biologics? Are there any new studies regarding the effectiveness and improved side effects of using biologics?
- What is the difference between UVA, UVB, and laser therapy treatment for psoriasis?
Of course, the questions you ask your doctor may be different, but it’s important to think about the main questions you’d like to discuss before you go into the appointment.
And your doctor is not the only source of information and help. You can learn a lot about your disease and ways to manage it by getting involved in your local support group. The National Psoriasis Foundation has a couple of great resources for newly diagnosed patients: Talk Psoriasis, an online support community of patients; and One-to-One, a program that connects newly diagnosed patients with mentors who have lived with psoriasis. I got involved, and in doing so, gained the confidence to eventually become a mentor to those who are newly diagnosed and full of the questions I once had.
Sabrina Skiles is a National Psoriasis Foundation volunteer mentor located in Houston. She has been living with psoriasis for 12 years. She and her husband like to stay active, travel and walk their 2 year old Havanese pup, Mac, and they love being aunt and uncle to their nephew Dominic.