A Mother’s Journey: Raising children with atopic dermatitis and overcoming the hurdles of misdiagnosis and delayed treatment.
Welcome to Špela’s world. Her story is not just about skin but about resilience, family, and the unseen battles of living with the skin condition known as atopic dermatitis (AD).
Špela’s Story
Špela, a mother from Slovenia, founded an organization to champion the cause of families grappling with atopic dermatitis (AD). Her dedication stems from her personal story – a mother of four, with her two youngest sons battling the burdens that come with AD.
“In Slovenia, we have some medications covered, but the wait to see a dermatologist was 15 months for my youngest,” Špela shares, highlighting the healthcare challenges she faced. Every visit meant a new doctor, a new set of eyes, unfamiliar with their ongoing struggle.
The Diagnosis and Beyond:
Špela’s third child, her first with AD, was born with what doctors initially dismissed as skin “detoxing”. The reality was far grimmer. “He was screaming all the time… I could tell something was wrong,” Špela recounts. The family’s journey was fraught with misdiagnoses, ineffective treatments, and a severe lack of guidance.
Her baby’s condition deteriorated to a point where he was hospitalized for 12 days, leaving him with a severely restricted diet that impacted his growth and development. Špela’s determination saw her son transform from a child unable to sit or walk to a thriving breakdancer with a passion for dance.
Living with AD
Špela’s experience sheds light on the physical and emotional toll of AD. “Treatment affordability was a constant worry. We often had to choose between food or cream,” she admits. It wasn’t just a battle against a skin condition but a fight for normalcy in every aspect of their lives.
She speaks candidly about the psychological impact, “You have to grieve for your healthy child that you didn’t get so that you can accept your life.” The family had to adapt their entire lifestyle, removing rugs, changing diets, and even doing separate laundry runs for each child to alleviate the symptoms.
Community and Advocacy
Through her struggles, Špela found strength in community and advocacy. She became a voice for those who couldn’t articulate their pain, confronting a healthcare system that often felt indifferent. “They can transplant a hand, but they can’t help with a skin condition?!” she exclaims, expressing her frustration and disbelief.
Conclusion
Špela’s story isn’t just about AD. It’s a testament to a mother’s love, resilience, and the power of advocacy. It’s about a family’s journey through adversity and the strength found in unity. It’s a story that echoes the experiences of many, yet remains uniquely theirs.
Join us in recognizing and supporting the hidden battles against atopic dermatitis and other skin conditions. Add your name to the open letter and help send the message that it’s “about our skin” – but it’s also about lives that should no longer be lived in the shadow of often misunderstood conditions.