Hypoparathyroidism: Two Thousand Sufferers in Campania, Urgent Call for Improved Therapies
Naples, January 28 – Approximately 2,000 residents of Campania are living with hypoparathyroidism, a rare but debilitating disease for which adequate treatment pathways are still lacking. This critical situation was brought to light during a scientific conference held in Naples, organized by Motore Sanità with the unconditional contribution of Ascendis Ph.
The profound impact of the disease was underscored by the poignant testimony of Chiara L., a patient representative who joined the conference via Zoom. “I have cerebral calcifications, in my fingers, I cannot drive because my hands sometimes lock up, I had posterior cataract surgery last March, and my kidneys and heart are also not functioning well. My electrocardiogram chronically shows a long QT interval. I have been battling this disease for years. I am a police officer, I have two children, a family to care for, and I fear for my health, my job, and my future,” she shared, highlighting the daily struggles faced by patients.
A Rare Disease with Significant Impact
Hypoparathyroidism affects approximately 15,000 people across Italy, with an estimated 2,000 cases in Campania. However, experts believe these figures are likely underestimated due to the absence of a dedicated disease registry. The condition can stem from an autoimmune disease affecting the parathyroid glands, often appearing in younger individuals, but more frequently it is a consequence of thyroid surgery for cancer.
Diagnosis of autoimmune hypoparathyroidism is complex and often significantly delayed. The conference brought together leading endocrinologists from the Vanvitelli School of Endocrinology, including Professor Katherine Esposito, Director of the Metabolism Diseases Unit, Professor Giuseppe Bellastella, Daniela Pasquali, Head of the Rare Endocrine Diseases Program, and Francesco Scavuzzo, Director of Endocrinology at Cardarelli Hospital in Naples, along with Giovanni Docimo, Head of the Thyroid Surgery Unit at Vanvitelli.
Insufficient Therapies and the Need for Hormone Replacement
Professor Anna Maria Colao, Professor of Endocrinology at Federico II, Vice President of the Superior Health Council, and UNESCO Chair holder at the Neapolitan Athenaeum, emphasized the historical neglect of this condition. “This is a disease we pay little attention to. Until now, there was no cure with hormone replacement therapy, the only one capable of restoring the complex functions of the missing hormone. We have ‘managed’ with calcium and vitamin D to achieve satisfactory blood calcium levels, but clearly, parathyroid hormone does not only affect calcemia (blood calcium levels) but, like all hormones, influences various organs and systems in relation to other regulatory hormones of calcium metabolism and perhaps even more. These insufficient therapies only allow a satisfactory balance to be restored in a portion of patients,” Professor Colao stated, highlighting the limitations of current treatments.
The discussion at the conference underscored the critical need for advanced therapeutic options, particularly effective hormone replacement therapies, to significantly improve the quality of life for those suffering from hypoparathyroidism. The lack of a comprehensive disease registry further complicates efforts to understand the true prevalence and impact of the condition, hindering the development of targeted healthcare strategies.
The medical community in Campania is now calling for increased awareness, research, and investment in developing more effective treatments to address the unmet needs of hypoparathyroidism patients.
