2023-04-29 13:39:00
The young woman, Gabrielle Emad, never imagined that she would seek help. She was lonely, trying to come to terms with the idea that she would one day reach a stage where she would lose her life, desperate and resigned as a result of the lack of awareness regarding the disease she was suffering from. She, who accompanied her sister on her journey with the same disease, found herself struggling today following learning that there is a medicine they call a “miracle medicine” that is able to stop the disease and allow her to live in a natural way.
It was not easy for her to talk regarding her illness, which she viewed as a given or a “taboo” regarding which little is said, and not many people know regarding it, even doctors. She lost her sister following her liver was damaged as a result of cystic fibrosis, she was only 34 years old when she left her, and today the 24-year-old is trying to dream of tomorrow and the future following the disease prevented her from living her life like all girls her age.
Gabrielle has a lot to say, her story may be a reflection of the stories of silent patients suffering from the same disease in a society that does not know much regarding it, and a country that does not make enough efforts to intensify awareness and facilitate their lives.
It all began, as Gabrielle told An-Nahar, when she was a very young child. She says, “I was suffering from pain in my abdomen. The doctor did not know the cause of this pain. At the age of three, the doctor diagnosed me with an allergy to wheat. A wrong diagnosis I paid for with atrophy.” In the pancreas over time, and despite my mother’s fears and the doctor’s suspicions that I suffer from my sister’s disease, which is cystic fibrosis, the doctor’s diagnosis was different and different from all these possibilities.”
Gabrielle continued to live with her pain, which began to grow with her and increase. She felt that something was wrong and that her allergy to wheat did not reflect the symptoms she was suffering from. However, the doctor insisted on his diagnosis until the symptom intensified and revealed to her a frightening truth.
Gabrielle remembers well that day when she might no longer bear her pain, describing the severity of the pain, “I felt like I was going to die, I might no longer bear it. After being admitted to the hospital and undergoing tests, it turned out that I suffer from cystic fibrosis. It was a great shock to us. I suffer from the same disease as my sister, despite my Symptoms differ between us to some extent.
Gabrielle finally knew in 2015 what she was really going through, and in 2019 her sister died following she suffered from atrophy in her liver as a result of the disease. Treatment options were not available as is the case today, and perhaps if she had undergone a liver transplant, life would have been written for her once more. Gabrielle regrets the lack of sufficient medical awareness and lack of knowledge of this disease, which few suffer from compared to other diseases. But following I learned regarding a new drug that might help a lot in controlling the disease, my outlook on life changed a lot, and I clung to the hope that I had lost years ago.
Her sister, Arza, received the treatments that were available at the time in Lebanon, but time was faster to snatch her before she might benefit from modern treatment that makes a difference in patients’ lives.
In parallel, the symptoms were intensifying for Gabrielle, who began to suffer from phlegm in the lung and the appearance of blood when coughing, and following she was admitted to the hospital, the doctor told her that she needed to receive Trixacar, but the only obstacle is that it is very expensive and costs $6,000 in addition to the other medicines that must be taken. Take it monthly, which costs regarding $2,000.
Gabrielle needs $8,000 monthly to breathe life and continue with it, and she is unable to secure this amount every month. She fears that her life will be taken away by force because of the financial hardship that prevents her from securing proper treatment. She needs to secure it on an ongoing basis in order to survive without her condition deteriorating.
Gabrielle does not hide her disappointment with what happened to her, “I suffered from a wrong diagnosis that caused pancreatic atrophy, and I am afraid that my health will deteriorate further as a result of my inability to secure appropriate treatment. I have heard so much regarding this medicine that some have called it the “miracle medicine” because of the great improvement it showed. It is evident in the lives of patients with cystic fibrosis. It is true that we need to intensify awareness more regarding this disease in order to avoid any other misdiagnosis that may harm the life of another patient, and most importantly, this disease does not remain a taboo that we are ashamed to talk regarding. I suffered from it and I do not want to Others suffer from it. I was ashamed to share my story or talk regarding my illness in front of anyone, but today I found myself facing a critical choice that threatens my life, which prompted me to break the barrier of shame and fear and search for a way of salvation.”
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