By Jaime Moy
“So, who in your family has it?” That question plagued me for three years after my son’s diagnosis of psoriasis at age 4 in 2003. Like many autoimmune diseases, psoriasis often runs in families, but no one that I knew had this disease, let alone any one in my family. Still, doctors persisted and asked that question at nearly every appointment.
But, let me back up and start at the beginning of our journey with psoriatic arthritis.
At age 4, my son Andy had a huge circle of what looked like cradle cap on his scalp. You often hear about a mother’s intuition, but it was his father’s feeling of “this just isn’t right” that led us to seek medical treatment for ringworm. After four weeks of intense antibiotics that didn’t clear up his scalp even a little, we turned to a dermatologist. He took one look at Andy and said psoriasis — not ringworm— and a biopsy of his scalp scales proved it.
So, that’s when the big question started: “Who in your family has psoriasis?”
After about six weeks, Andy’s psoriasis went into a full flare, covering most of his body from head to toe. Frequent visits to the dermatologist during the next year were common as we tried unsuccessfully to get his disease in check, and the doctors kept asking that same question.
Then, when Andy was diagnosed with juvenile psoriatic arthritis at age 5, his pediatric rheumatologist asked, “Does anyone in your family have psoriatic arthritis?”
Turns out, I do — only I didn’t know it at the time. It wasn’t until three years after Andy’s diagnosis of psoriasis that I started getting red, scaly spots on my arms, chest and back. I knew right away what it was. Six months later, I received a diagnosis of psoriatic arthritis. It was 2007 and I was 28 years old.
“Fantastic!,” I thought. “I gave both diseases to my son. I’m feeling like the best mom in the world.” And to add to my guilt, my disease was extremely mild and Andy’s was severe. A few topical creams and over the counter anti-inflammatories used occasionally kept my disease in check. But Andy was already taking nine medications, including methotrexate, a low-dose chemotherapy drug given once a week by injection, and a new biologic that was just approved for children.
Over time, I came to realize that I did not give Andy psoriatic arthritis. Sure, I may have inadvertently passed along some of my genes, but it took a trigger like strep throat to start his skin inflammation. In hind sight, we’re pretty sure Andy had signs of arthritis years before his diagnosis. As first-time parents, we just didn’t know what we were witnessing.
Fast forward to spring 2012 when the severity of my disease caught up with Andy’s. Stress triggered a flare and sent my disease out of whack. Now having visible scalp psoriasis and plaque psoriasis on my body, and my arthritis not allowing me to even grip the steering wheel to drive, it was time to step up my treatment. After six months of unsuccessful treatments, I started putting my disease at bay with a biologic.
So, who in my family has it? Me. Along with cousins, uncles and other family members. Not long after my diagnosis, I found out that psoriatic arthritis runs on my biological father’s side of our family tree. He died when I was very young.
If you consider that psoriasis is the number one autoimmune disease in the U.S., affecting 7.5 million Americans, it’s no surprise that my psoriasis “family” now extends coast to coast and even across the world. By seeking support on TalkPsoriasis.org, I know that I am not alone. I know Andy is not alone.
And those feelings of guilt I had of passing on the diseases to my son? They rarely creep up any more because I know there was nothing I could do. Instead of feeling down, we focus on volunteering with the National Psoriasis Foundation and helping other families who are just starting their journeys with these diseases. It’s amazing how much better you feel when you know you are making a difference in others’ lives and helping them to realize that they are not alone.
Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.