"כנופית בזק" -אירוע בישראל לרגל יום המודעות הבין לאומי ליתר לחץ דם ריאתי - 20.5.14
העמותה הישראלית ליתר לחץ דם ריאתי מפיקה אירוע FLASH MOB לרגל יום המודעות הבין לאומי.
האירוע שהתקיים בקניון וייצמן בתל אביב [רחוב ויצמן 14 תל אביב] היה בסגנון "כנופיית בזק" – "FLASH MOB" [בו מופיע קבוצת אנשים לפתע במקום מסוים, עושה דבר מה שלא מן השגרה, ומתפזרת כהרף עין].
באירוע זה הופיעו בקניון וייצמן קבוצת חולים מהעמותה, בני משפחה, ידידים ואנשים שונים מהקהל, והפריחו יחד בלונים כחולים, מלאים בגז הליום , ועליהם הכיתוב "יש לי לחץ ריאתי..", המשתתפים לבשו חולצות מעוצבות לרגל יום המודעות הבין לאומי ליתר לחץ דם ריאתי, וכן לבשו על ידיהם כפפות כחולות, וכל זאת כשברקע מתנגנת בעוצמה פתאומית מוזיקת רקע של "מכתב לאחי" [עילי בוטנר וקובי אפללו] כמו כן הורם לאוויר שרוול בד רחב שיהיה צמוד לשני זרי בלוני הליום גדולים משני הצדדים, ועליו הכיתוב "יום המודעות הבין לאומי ליתר לחץ דם ריאתי .
האירוע התקיים בכ' באייר תשע"ד - 20.5.14 בשעה 17:00. ההתכנסות לאירוע החלה משעה 16:00 לצורך תדרוך מוקדם.
אירוע זה היה אחד מהאירועים המתקיימים בעולם [בכל מדינה בסגנון שונה] לרגל יום המודעות, לצורך הגברת המודעות למחלה נדירה זו, שאבחון מוקדם בה מציל חיים ומונע את הידרדרות המחלה.
האירוע לווה בצילומים ווידאו וכוסה ע"י התקשורת.
לתמונות בפייסבוק מהאירוע:
סרט מרגש המסקר את האירוע.
כתבה באנגלית על אושרת
“I HAVE NO AIR LEFT.” LIVING WITH PULMONARY-HYPERTENSION.
“I HAVE NO AIR LEFT.” LIVING WITH PULMONARY-HYPERTENSION.
From being a healthy woman involved with daily physical activity, Oshrat had become completely dependent on an oxygen tank and on her husband’s assistance in getting dressed and putting on shoes. Test showed that she suffers from pulmonary-hypertension that could lead to death if not treated immediately. After a lung transplant and a difficult two-year rehabilitation, she is ready to start a new life.
At the age of 29, Oshrat was an active athletic woman who went for walks every evening and took care of herself. At some point, she noticed that her body was not keeping up with her daily physical activity. “I felt that I was shortening my daily routine because of a lack of air and I started to feel a fast pulse in my neck,” she relates. “In time, I also noticed that I was having difficulty even climbing the few steps to my home, which was on the first floor. I had no more air.”
Oshrat was lucky that her family doctor was alert to her condition and immediately sent her for an echocardiogram for her heart and lungs. The tests showed that Oshrat’s heart was enlarged three times its normal size and she was sent for a series of additional tests and a cardiac catheterization that indicated pulmonary-hypertension. “This was the first time that my husband and I had ever heard about the disease –pulmonary-hypertension,” she said.
Patients with this disease, among other things, suffer from difficulty breathing and general weakness, to the point of difficulty with daily functioning that may manifest itself in difficulty walking even a few meters, and with difficulty washing and dressing independently. Lack of awareness about this disease puts those ill with the disease in danger of dying. Late diagnosis of the disease in a number of cases led to deaths that could have been prevented with early diagnosis and intervention.
Suddenly Oshrat discovered that she had to re-define her life and her daily routine, which affected those around her, particularly her husband. “I was very restricted and needed oxygen. I could not bend, get dressed, go up the steps, or shower by myself. My spirits were low and this negatively impacted the disease. For three years my situation only worsened. I lost consciousness many times and each time had to be hospitalized for a few days until my breathing re-balanced. I did not feel like a young woman 29 years of age. Even sleeping, I had to sleep half-sitting due to the difficulty breathing that people with pulmonary-hypertension face. I wanted to be in an oxygen tank all the time so I could have air.”
After a year and two months of being ill with the disease, Oshrat and her husband were notified that she had been entered on the list of people who are eligible for a transplant since her condition had worsened significantly. At last, the day they had been waiting for arrived. “The doctor called me and told me that there are lungs for me and was I interested in coming in for a transplant. In spite of hesitations, the family said that I couldn’t continue like that and that I must be myself again.”
Oshrat underwent a double lung transplant, with a recovery period that was very difficult for her, but in the end she succeeded in returning to herself again, and in spite of some limitations, she is no longer dependent on an oxygen tank.
“You are not allowed to get pregnant.”
Pulmonary-hypertension, which is considered one of the most difficult diseases about which little is known, is common primarily among young women, who are proscribed from getting pregnant due to the dangers that the physical stress of pregnancy puts on their bodies. Pulmonary-hypertension affects the arteries that deliver blood from the heart to the lungs. This causes a deficiency of oxygen in the blood. Due to the high pressure on the heart to push blood to the lungs there is the danger of development of imp[aired right heart function and without proper treatment this can lead to death, resulting from right heart failure in delivering blood to the lungs.
Oshrat says,” I got married at the age of 24 and underwent fertility treatments. When they discovered that I had pulmonary-hypertension, we had to stop the treatment, since pregnancy would have put my life in danger. Only after three years with pulmonary-hypertension and two years of recovery from the transplant did I get permission to get pregnant and we hope to be successful soon.”
According to Prof. Kremer, head of the Center for Lung Disease at the Rabin Medical Center, Beilinson Campus, diagnosis of pulmonary-hypertension can be problematic since its symptoms in the early stages are similar to other problems and diseases like shortness of breath, asthma, problems with physical fitness and obesity, and even panic attacks.
“According to the statics,” says Prof. Kramer, “for every patient that is diagnosed with pulmonary-hypertension there is one patient who is not diagnosed properly and is not treated for three years or more from the onset of the disease.” The professor adds, “In recent years, there has been better awareness of the disease and there have better diagnostic tools. Today, it is possible to estimate the pressure in the lungs with an echocardiogram, which is the first clinical sign of the disease, and then confirm the diagnosis with other tests, which include cardiac catheterization of the right ventricle, lung function, CT of the chest, etc.
Treatment of the disease, explains Kramer,” is done with oral medications like Tracleer Volibris or Viagra [Revatio] that enlarge the blood vessels in the lungs and as a result lower the blood pressure in the lungs. “At the same time,” he adds, “a treatment with blood thinners is implemented to prevent blood clots. In severe cases of the disease, a combination with other medications from the prostacyclin family [like Ventavis Remodulin or Flolan] which are inhaled or administered intravenously, are required. When this treatment does not improve the patient’s condition, a lung transplant is required, which can lead to recovery from the disease, but which has far reaching effects of its own.”
Today Oshrat (37) is a member of the Pulmonary-Hypertension Association. She says that many patients who go to a doctor are diagnosed with panic attacks or psychological problems and that it is important to know that there might be another diagnosis for the symptoms. Pulmonary-hypertension can lead to death and, therefore, it is important to have early diagnosis and treatment.