A Jordanian girl with a rare disease narrates the journey of years of patience: The doctors did not believe me
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When she was ten years old, Israa Al-Tayeh began suffering with difficulty breathing, skin sensitivity, joint pain, and severe constipation .. She was sure that there was something wrong, but the doctors were unable to determine it.
For nearly seven years, after visiting more than 20 doctors from Jordan to Canada, all you heard was that she was fine. Even so, the symptoms did not disappear.
Israa, now 18, said the doctors did not believe her and their signal was to blame her for exaggerating while she was suffering and no one could feel her pain.
She explained, “After we were doing proper examination and examination, I was surprised because I knew that I was in pain every day and was not experiencing it, but I was not aware of this thing with the tests and no limit, even the doctors did not believe me. Bless you, I was exaggerating with your reaction, so I was very upset because I was feeling something and suffered from suffering even before me. No text to me was felt by his poetry, with the other so that I could compose and act out.
It was then that Isra decided to research by herself, and spent hours in the library and on the Internet, reading about the symptoms of rare diseases, and carefully writing them down to see if they matched her condition.
Al-Tayeh said that in her research, she found a syndrome called (Ehlers-Danlos), and she was astonished when she noticed that her symptoms matched her condition exactly. Doctors later confirmed the diagnosis.
And she explains, “At first, when I was going and straying, I did not talk to me with his own knowledge, I did not tell my point of view, out of respect for the doctor, and because he was the salvation, I am a young girl. The doctors arrive at a solution or an answer to me, so I sure did not like to speak, but in two dimensions, when I saw that we had reached a state of chaos, I had to speak and communicate my voice.
Ehlers-Danlos syndrome is a rare disease that affects one in every 10,000 to 20,000 people in the world. The disease affects the connective tissues of the body, and its symptoms are manifested in problems of the joints, skin and the digestive system. There is no treatment for it at the present time.
Israa continued that she was overjoyed to finally reach the diagnosis and understand what is happening inside her body, but she was deeply sad that there were no doctors who could treat her.
Because of this disease, a feeding tube must be inserted through her nose and into the small intestine, because her stomach can no longer support and cannot function normally.
Despite all these challenges, the young woman refuses to allow the disease to change the course of her life. She obtained a black belt in Taekwondo and started giving lessons to children in her basement. Israa shares her story and experience on social media, hoping it will remove the stigma associated with chronic diseases.
For his part, Mahmoud Al-Tayeh, Israa's father, said that he was in pain when he saw his daughter suffering, but that her steadfastness became an inspiration to him.
He added, “For me, as a lost father, I don’t know how to solve my daughter’s problem, not with any doctor, or with any hospital, not even in any country. I was ready and actually traveled to foreign countries, and in the end there was no solution. It was a difficult feeling, that your daughter is in pain, the pain continues, I But I want to stop this pain ».
The father expressed confidence in his daughter and was pleased with her patience and perseverance.
Israa - who is about to graduate from high school - said her dream is to study medicine and focus on rare diseases.
She explained that the motivation behind her desire is to try to help people reduce time and effort.