Eileen Mercieca spent three quarters of her life in hospital or bedridden due to painful attacks in various parts of her body. Recently she was told she suffers from a rare disease, which inflames the muscles and paralyzes her for days and even months.
A diet and specialized treatment she underwent in an Italian hospital made a great difference in Eileen’s life. She underwent surgery on various occasion, however these were unsuccessful. No one could cure her disease, until a doctor had suggested her to undergo a DNA test.
During Insights programme, Eileen said that tests showed she suffers from the Familial Mediterranean Fever, a rare disease which attacks various parts of her body, mostly her back, feet and heart. “It is like a net on the muscles which inflames; you become very sick and without strength, and cannot even eat. This goes on for various days and months”, she said.
Eileen added that her life turned all over when she went for treatment at the Gemelli hospital in Italy, where she was given a diet and her condition improved by 40% as the attacks were no longer acute. “The crucial food I have to avoid are milk products, apart parmegiano cheese and yoghurt because there are natural antibiotics that assist to fight inflammation”.
Since she joined the National Alliance for Rare Disease as a member, Eileen says she can share her problems with those suffering with the same disease and is assisting an American doctor in research on the Familial Mediterranean Fever in an attempt to find a cure. “At the National Alliance I found another family; you do not feel alone as you share the burden and listen to others. You feel less of what you have.”
The Alliance for Rare Disease is finding further professional support even in the international level, with Marigold Foundation’s chairperson, Michelle Muscat this week will address a United Nations committee to call for a global dimension to the situation of patients with rare conditions.