This week’s blog was written by Sailaja Maganti, a passionate patient advocate. She shares her story of being diagnosed and navigating life with Prurigo Nodularis.
Sailaja also leads the support group, Prurigo Nodularis International.
It started with one…
Over the course of a year, one angry lesion became two. Over the next two years a dozen itchy lesions populated my arms.
Within half a decade I was carpeted from top to toe in hundreds of itchy lesions. This itch has layers, it itches, stings, burns, is painful, like a million piercing daggers, like insects with their myriad of legs crawling underneath my skin.
Day and night, relentless, and there are also concentrated itch attacks, if that is imaginable!
I went from being someone whose whole life was on track, with a career I coveted, making plans with my fiancé, thinking of building a life, a family – to freefalling into a bottomless pit of itching and scratching.
Half a decade in to living with my disease I collapsed. I was exhausted by the relentless itching and lesions and lack of diagnosis with no support.
I was seen by over 100 dermatologists at some of the most respected skin clinics in the UK.
Nine biopsies, a merry-go-round of tests and hospital departments, there was even a lymphoma scare. I finally received the label – Prurigo Nodularis, at a skin clinic in South India, where my ethnic roots lie.
The combination of a rare neuro-immunological skin condition and medical training lacking representation was a double whammy!
Imperfect skin in a ‘perfect’ world
The world is not kind to those with skin conditions. The disease burden of Prurigo Nodularis is as severe as stroke, congestive heart failure, COPD and similar to severe systemic disease. Yet there is no empathy.
Pain and itch are analogous, yet I was dismissed as having “just an itch”. There’s stigma and shame, and I became physically unrecognisable to myself.
People think you are contagious. I’ve had people move away from me, make cruel comments, lost friends, changed careers, my skin dictates what I wear, it controls everything…it’s brutal and endless. Then there are the years of itchy, sleepless nights, spent ripping apart my skin.
Learning to thrive
I turned then to a new field, Psychodermatology.
Receiving for the first-time true kindness and empathy.
My Psychodermatologist’s words “you have suffered a lot Sailaja” still echo. The work we did gave me the tools to live with being at the mercy of a nameless, ruthless condition and subsequently to cope with a debilitating condition that had a name, but no dedicated treatments.
Most importantly, the work we did together helped me find my voice, it empowered me with the realisation that I am the expert of my condition.
After many years of isolation, I found a wonderful support group, Prurigo Nodularis International, which I now lead and have applied for formal charity status. We have almost 5,000 members across the globe.
I am an outspoken advocate, determined to see patients with rare conditions receive the care and treatment they need and deserve, on par with mainstream conditions.
I’m humbled to be collaborating with the rare community on initiatives, including building a patient driven rare disease research platform.
I can finally see meaning from the mess that Prurigo Nodularis made.