Taking back control

I have an amazing village: a loving husband, 3 beautiful daughters, grandchildren, and supportive friends. The kitchen is my special place where I cook for my family or bake when I’m stressed. I also love to sing.

I never knew how much I would need this support system until I was diagnosed with GPP.

My journey began in 2009, with joint pain and itching. I went to my doctor, who recommended topical ointments. But over the next 2 years, my symptoms worsened — red patches, pustules, and constant burning and itching. My doctor then suspected GPP and referred me to a dermatologist, who confirmed the diagnosis.

I wish I could say that’s when my journey improved, but I spent nearly 14 years in extreme physical discomfort with little relief from GPP.

My flares were so bad that at times I was hospitalized. I stopped working and would just lay in bed, singing to get my mind off the burning on my skin. There were times when I’d be up in the middle of the night baking banana bread because I couldn’t sleep.

I’m so grateful to my village who encouraged me every day! My husband loved me whether I had peeling skin or not, and my daughters were my biggest cheerleaders. On days when I didn’t want to get out of bed, they would say, “Nope, you’re going to get up!”

My doctor and nurses also became like family to me, encouraging me to never give up hope. I felt so fortunate to have a doctor who followed the latest GPP developments. So, when SPEVIGO was approved by the FDA, we discussed the treatment and potential side effects. We determined together it was a good option to explore.

I was initially treated with SPEVIGO IV when I would have an active flare. Currently, I use SPEVIGO SC monthly to help protect against flares. Prior to being prescribed SPEVIGO SC, I had about 5 severe flares a year.

Since starting SPEVIGO SC, I’m happy to share that’s no longer the case. SPEVIGO has really helped keep my GPP under control.

GPP no longer dominates my life.

If I could say one thing to the GPP community it would be, you’re worth the fight. Talk to your doctor about treatment options and never give up!

Individual results may vary based on many factors, including elements like the severity of your GPP, your treatment plan, and any other conditions you may have. Shandrita has been compensated for the time spent to share her story.