Ep. 260 "Learning How to Navigate Psoriatic Disease Together as a Family"

Pediatric rheumatologist Dr. Pamela Weiss speaks with Michael and his 12 year old daughter Ava about  navigating the challenge of living with psoriasis and psoriatic arthritis together as a family.  

Join moderator Kaleigh Welch as she discusses the challenges of living with psoriasis and juvenile psoriatic arthritis (JPsA) from diagnosis, misconceptions about psoriatic disease, to management and treatment with pediatric rheumatologist, Dr. Pamela Weiss from Children's Hospital of Philadelphia, Division of Rheumatology, along with Michael and Ava, whose psoriatic disease is truly a family affair.

The intent of this episode is to raise awareness about the complexities and nuances associated with living with psoriasis and psoriatic arthritis as a child or an adult and not letting the disease stop you from doing what you love to do.

This episode is sponsored by Amgen. Mike, Ava, and Dr. Weiss were compensated for their time.

Timestamps:

·       (0:00) Intro to Psoriasis Uncovered and guest welcome pediatric rheumatologist Dr. Pamela Weiss, Michael and Ava Sayles who both have been diagnosed with psoriasis and psoriatic        arthritis.  

·       (1:28) What the psoriatic disease diagnosis process could be like for children and adults.  

·       (5:34) Misconceptions associated with psoriasis leading to delayed diagnosis of psoriatic arthritis.

·       (7:36) What people misunderstand about plaque psoriasis and psoriatic arthritis.

·       (11:06) Challenges to finding the right treatment while living life with psoriatic disease.

·       (17:24) What drives treatment choices for psoriatic disease in youth.

·       (19:59) Assessing what’s most important in reaching treatment goals.

·       (23:57) What the future holds for management of Juvenile Psoriatic Arthritis (JPsA).

·       (26:10) Living with psoriatic disease is challenging but find what’s right for you and don’t give up on what you love to do.

Key Takeaways:

·       Diagnosis of plaque psoriasis and psoriatic arthritis can be challenging given subtleties that can occur in the presentation of the disease in adults and children.

·       There are a variety of treatments that work either alone or in combination to treat plaque psoriasis and psoriatic arthritis with choice of treatment dependent on what is the primary goal for the individual’s physical and emotional health.

·       The future is bright as understanding of the disease increases and treatment options expand and become more targeted to more effectively address skin and joint issues associated with psoriatic disease.

Guest Bios:  

Pamela Weiss, M.D., MSCE, is a pediatric rheumatologist and the Clinical Research Director of the Division of Rheumatology at Children's Hospital of Philadelphia. Dr. Weiss is also the Distinguished Endowed Chair in the Department of Pediatrics. She has advanced training in clinical epidemiology with a focus on early diagnosis, and targeted treatment of children with spondyloarthritis (SpA). Dr. Weiss is also a Professor of Pediatrics and Epidemiology at the Perelman School of Medicine at the University of Pennsylvania. She is a member of the American Academy of Pediatrics, American College of Rheumatology, the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), the Spondylitis Association of America, and the SPondyloArthritis Research & Treatment Network (SPARTAN).

Michael and Ava Sayles, psoriatic disease is a family affair. Both father and daughter, successfully navigate living with plaque psoriasis and psoriatic arthritis. Michael or Mike was diagnosed in his twenties, and Ava at age 7 and then later on juvenile psoriatic arthritis. She is now 12 years old.  They have experienced issues with diagnosis, and a long journey of finding treatment options that worked for them. Mike found the best solution was establishing a routine or rhythm of treatment around work and school to avoid flare-up’s if possible, saying “keeping on top of what you need to do for the psoriasis and the arthritis becomes a big part of your life". 

Resources:

Our Spot: What is Psoriatic Arthritis