I recently got the chance to chat with Sabrina Skiles, a National Psoriasis Foundation mentor since 2009, blogger extraordinaire and psoriasis champ. And those are only three things that make Sabrina, Sabrina.
“Hiding isn’t the answer. Sharing is the answer.” Her role as mentor at the NPF allows her to connect with newly diagnosed patients and provide them with someone who understands to talk to. She believes that its important to accept your psoriasis; it’s a part of who you are. “The more I learn, the more comfortable I feel talking about it,” Sabrina proudly proclaimed to me.
Sabrina also believes it’s extremely important to develop a strong rapport with your healthcare professional and you should always openly discuss the following:
1. Talk about the amount of stress you’re undergoing at work and discuss any new projects you’re taking on
2. Discuss any big life events or impactful situations in your personal life (ex. moving, new job, death, fight with a loved one, etc.)
3. Have a conversation about your overall quality of life, which includes your treatments (ex. how happy are you, are you happy with your treatments? is there something you want to try? etc.)
“We focused the event on telling a patient’s perspective on what doctor’s should know about the patient experience. We wanted people to know that psoriasis is a serious disease that impacts the whole person – mentally, physically, emotionally – and that it’s important to factor in quality of life. It’s important for people to take an active role in their health care and talk closely with their doctor in order to tell them fully about the patient experience with psoriasis.”
“I learned a lot more about one of our volunteers, Sabrina. I learned that Sabrina feels an important part of her disease management is talking to others about her psoriasis and helping them cope. She does this as a volunteer mentor through the National Psoriasis Foundation One to One mentor program. It’s always great when we hear how someone who struggled initially with their psoriasis is able to come full circle and give back by helping others who are struggling. I learned that Sabrina has an identical twin who doesn’t have psoriasis, even though she and her mom do. The genetic factors to psoriasis are very complex and interesting.”
For more about Sabrina, check out her blog at sabrinaskiles.com.
For more information on the National Psoriasis Foundation, visit psoriasis.org.