Can you please tell us a bit about yourself? What are your passions, hobbies, job?
I am a 79-year-old male living in New England. As you know, we have 4 seasons of weather that bring us wind, rain, snow, storms, hurricanes, etc. Our saying in New England is, “If you don’t like the weather, wait 5 minutes – it will change.” My passion is my family. They are very dear and important to me. I am retired, so my job is to be present to those whose lives I touch. I am a wood worker, but because of the impact psoriasis has had on my lifestyle, I have had to temper my involvement, and I only build wooden models now.
What type of psoriasis do you have, and how long have you experienced the disease?
I have had the following types of psoriasis over the years: plaque, palmoplantar, inverse, genital, guttate, and erythrodermic. I was first diagnosed in March of 1964 with psoriasis, so that is over 57 years.
Do you have PsA or other related diseases (comorbidities)?
I was diagnosed with PsA [psoriatic arthritis] in June 1976, and I was diagnosed with both ankylosing spondylitis and cervical spondylosis. I have had heart issues, but I am not sure they are comorbidities. I have had at least 15 biopsies for skin cancer that resulted in 9 or 10 procedures to remove either basal cell carcinoma or squamous cell carcinoma. In late 2020, I was diagnosed with Parkinson’s disease.
How would you describe your unique experience of having psoriasis?
Maddening! It is a disease that can take over your life, and if you let it, it can separate you from everything. My unique experiences are mostly rooted in treatments. I did not respond to some of the treatments available. Another experience was the thickness of the plaques in the knee and elbow areas. It seemed as soon as you reduced the thickness it would be back in a couple of days. The difficult part is when they would crack and bleed.
How does psoriasis impact your life day-to-day?
In the beginning when it was mild, not very much. As time passed and it got more aggressive it was difficult and embarrassing to meet socially and function in the world of work. Scaling was a problem. I would have to wear clothing that would catch the scales before they hit the floor. Today, and since 2005, I have had little impact from psoriasis, but a huge impact from psoriatic arthritis.
Does psoriasis impact your relationships?
I have always been very open with my psoriasis, so the impact on relationships has been one of education about the disease. Because of this attitude, I have met may very open and generous people – those who have made my life better.
What do you do to treat and manage your psoriasis?
In 1964 it was a topical called anthralin cream. In later years I used a combination of salves, lotions, pills, sprays, and phototherapy (both at home and at a medical facility). In 2005 I started on a biologic treatment and within 45 days I went from 80% or 85% body surface area coverage to 10%. Then shortly thereafter, down to nothing but memories. I am still on the biologic treatment today.
What do you know about psoriasis now that you wish you had known when you were first diagnosed?
If I had known it was going to be with me for life, it would have been easy to take it more seriously, but information and knowledge was scarce and unreliable (no Internet). I only met 1 person with PsA, and only briefly, so my understanding of comorbidities was non-existent. Now we have an abundance of information, which is an outstanding aid in treatment.
What do you want others to know about living with psoriasis?
Please take it seriously. It is not just a rash that will go away. Learn as much about psoriasis and the long-range effects because that could be the answer for a more full and complete life. Please don’t be afraid to ask for help. Everyone who speaks to you has been through similar situations that you may be going through.
Answers are lightly edited for clarity and style.