At "Finding Your Digital Voice" (sponsored by Janssen), along with my fellow psobloggers and social media group. Photo courtesey of National Psoriasis Foundation.
The National Psoriasis Foundation’s National Volunteer Conference (#NVC15) filled my brain with facts, ideas, and best practices from incredible people, including NFL player Jonathan Scott who spoke at the conference and inspired the crowd with his psoriasis story at the opening session and the children and teens at the youth track.
Doctors and researchers provided facts, figures, and data to arm volunteers with knowledge to better understand psoriasis and psoriatic arthritis and to spread awareness and hope for a cure back in their own communities. Where else but #NVC15 can patients and researchers talk and collaborate about moving forward towards a cure? Thank you, NPF, for bringing us together!
Here’s a recap of #NVC15 sessions I attended.
Opening Session
50% of psoriatic disease patients are not treating to target.
NPF has increased research grants by 600%!
NPF’s strategic plan includes improving health outcomes for psoriatic disease to ensure people get access to treatments they need.
Scott: “Psoriasis is only debilitating if you make it debilitating.” So true and a great message for the kids and teens when he and NPF (with support from LEO Pharma Inc.) unveiled a new scholarship program for NPF youth ambassadors. Read more about the program. (Andy, already a youth ambassador, is excited about this opportunity!)
Andy (second from left) and #NVC15 teens at the conference, hanging out with NFL player Jonathan Scott. Photo courtesey of National Psoriasis Foundation.
Working With Your Doctor
Having a board-certified specialist is a must.
Just because a doctor is “good,” he/she may still not be the right fit for you. It's ok to find a new doctor.
NPF has a great list of doctors as an online resource. Check it out at psoriasis.org.
Make a list of questions and prioritize them in case the doctor doesn't have time to answer all of them in one visit.
Schedule doctor appointments to be the first one in the morning or the first one after lunch to avoid wait times in the office
You're more likely to have better health when communication with your doctor is good.
Parent Roundtable
If we don't partner as doctors and parents, we won't advance in treatment and patient care.
Almost all prescriptions for children are written off label.
Doctors, patients and parents ALL need to be open minded.
Comorbidities in pediatric patients are very important issues, but we need more research.
Family history is the biggest risk factor for kids with psoriasis to go on to have psoriasis as adult.
Teenagers need to take ownership of disease to help transition to adult care.
Doctors should role play with young patients to help ease bullying and have kids take ownership of the disease.
Roundtable Research Panel
Patients say comorbidities should be renamed “concurrent conditions.” I agree!
There are no strong biomarkers yet for psoriatic arthritis, but researchers are working on it.
Many patients feel like they, not their medical providers, are leading the charge for alternative medicine.
Skin is an incredibly accessible resource. Biomarkers for psoriasis are the future.
90% of the time, doctors can’t predict when a patient will flare.
Rheumatologists and dermatologists should work together for the good of the patients.
Even though scalp psoriasis is only 4% of body coverage, it can still be quite debilitating. Patient compliance is needed in order to get the disease under control.
Researcher: “Don’t underestimate the power of your voice. It’s probably the strongest one.” Use your voice during NPF’s Capitol Hill Days.
Clinical trials and registries are important to advancing medical treatments.
Patients need to educate cardiologists about the psoriasis/heart disease risk factors.
It is important to reach young doctors to help get them the psoriasis information and education they need.
Research is focusing on microbiomes and how they affect inflammation.
Psoriatic Comorbidities
Scans of psoriasis patients who feel healthy still show inflammation in organs like the liver and heart.
More skin inflammation equals more inflammation on the inside of the body.
People with psoriasis are 58% more likely to have a major cardiac event.
Being overweight at 18 increases a patient’s risk of developing psoriatic arthritis.
Losing weight helps improve psoriatic disease and makes treatments more effective.
Severe psoriasis increases the risk for Type 2 diabetes.
Psoriasis patients are more prone to fatty liver disease.
Psoriasis patients are four times more likely to develop Crohn’s disease. Psoriatic arthritis patients are six times more likely.
Psoriasis patients have an increased risk of lymphoma. This is separate from the biologic medication use.
People with psoriasis sleep an average of 20 minutes less than the regular population.
Vitamin D helps regulate the immune system. It is recommended that patients be in the 50-60 range.
Early evidence shows that treating the skin with biologics also helps inflammation inside the body.
To help lower your risk of comorbidities, get physical activity, don’t smoke, get plenty of rest, and keep stress low. Make dinner the smallest meal of the day to help keep a healthy weight. And don’t eat junk food!
Until the next conference in 2017, may your voices and passion for a cure be strong. A lot can happen in two years. I can’t wait to see what the future holds!
