“I spent 12 years visiting various doctors; in Romania, no one knew what it could be.”
Nicoleta’s journey with systemic mastocytosis began in 1996, when she started experiencing unexplained anaphylactic reactions. It took 12 years, numerous medical appointments and a life-threatening event before she finally received a diagnosis.
Today, Nicoleta balances the daily challenges of living with systemic mastocytosis, her professional career and family responsibilities, while dedicating herself to supporting others affected by mast cell diseases in Romania.
Unnoticeable. Unmistakable.
Twelve years searching for answers
“I spent 12 years visiting various doctors; in Romania, no one knew what it could be.”
After years of unexplained symptoms and repeated anaphylactic reactions, Nicoleta was diagnosed with systemic mastocytosis in 2008, following a biopsy suggested by haematologist Horia Bumbea.
Living with daily limitations
“Systemic mastocytosis imposes significant limitations on me.”
For Nicoleta, symptoms including severe pain, gastrointestinal difficulties and reactions to everyday triggers have changed almost every aspect of her life.
“Everything affected me; climbing stairs, even a simple dinner out, became impossible. I used to be a competitive athlete and a mountaineer, but now I can’t do any of that anymore.”
Adjusting to these changes has been an emotional journey.
“It’s as if I met a different version of myself; I never thought I would become like this. Accepting this new version of me was a long and difficult process.”
Finding purpose through helping others
Despite the challenges she faces, Nicoleta continues to work as a legal advisor and support people living with mast cell diseases through the Mastocytosis Support Association Romania.
“It helped me enormously that I’ve been volunteering for 36 years; helping the 200 people in Romania with mast cell diseases gives my life new meaning, as does my faith as a practicing Catholic.”
What unmistakable means to Nicoleta
“In the context of mastocytosis, “unmistakable” means this: the disease is unmistakable because it imposes limits on you daily – limits that seem impossible to overcome – and yet, you manage to overcome them.”
Nicoleta also has a message for those who may not understand the realities of living with mast cell disease.
“I want them to understand that the disease isn’t a choice, that life is a right, and that only by standing together can we overcome it.”
“Since my diagnosis, I have decided to fight for the rights of patients with mastocytosis and mast cell disorders, ensuring their access to cromoglicate, cromoglicate cream, and genetic testing. I managed to raise and donate approximately 300,000 euros through fundraising initiatives, an achievement that ranked me among Romania’s top ten fundraisers in 2022.”
Every story matters. Share yours.
Like Nicoleta, many people living with mastocytosis, MCAS and other mast cell diseases face challenges that others may not see or understand.
By sharing your experience, you can help raise awareness, build understanding and remind others that they are not alone.
Your story deserves to be heard.
