Our annual CF Family Education evening was on Tuesday, January 9th, 2018.
The topics we covered:
Prof. Kerem Eitan - The Latest CF Treatments
Mrs. Shoshi Armoni, RN, BSN - Whose Health is it Anyways?
Dr. Shoseyov David - Is there only "New' under the Sun"?
We made our presentations to a room full of parents of young CF patients and adult patients including one who is already well into his 70s.
Science Museum Show Hadassah's Cystic Fibrosis Center coordinated an afternoon event at the end of November in conjunction with the Bloomfield Science Museum Jerusalem and Simcha LaYeled as part of our holistic approach to health care. We recognize the on-going challenges and hardships in raising children who have difficult, chronic conditions. We understand the stress of monitoring and treating a sick child; the efforts required to be parents to the healthy siblings, while still finding quality time as a couple; the reality of coping with the dynamics between the healthy siblings and their chronically ill child, to mention but a few. On this one afternoon in November our patients, with their families, came to the museum, along with our staff and their families. Instead of meeting in the confines of Hadassah's hospital corridors, with the anxiety and stress of trying to accomplish all the necessary appointments and meetings before the clinic closes, our veteran and recently diagnosed patients came to the museum to enjoy a few festive, educational and entertaining hours together with us.
The Bloomfield Science Museum Jerusalem seemed like an ideal venue where science, fun and health are all combined. Their current new bicycle exhibit marks the bicentennial of the bicycle’s invention, the invention that changed the world. It includes dozens of interactive exhibits; historic collections from Canada, the USA and Holland, including a 200-year-old model from the bicycle's humble beginnings, unique contemporary bicycles, works of art, video clips, graphics and more. The museum provided some special activities for our group, demonstrating some basic science in a fun, entertaining way, and offered some guided tours around their bicycle exhibit.
Our large group enjoyed refreshments and a festive meal provided by Simcha LaYeled, a non-profit organization composed of hundreds of young volunteers. Their volunteers participate in various projects and mentoring programs throughout Israel with the goal of improving the life quality of children and adolescents suffering from disease. They used this event as an opportunity to raise awareness of their services among the many families who joined in this special occasion. Many of our young patients are taking advantage of their special programs, but some families are not aware of what Simcha LaYeled offers.
"We know that on the one hand, this disease shortens life, but on the other hand, with the treatments available today, we've reached a situation where many of our patients will attain old age and feel good," explains Prof. Eitan Kerem, Hadassah's CF center director and the Children's Hospital's head of the Division of Pediatrics. "Every day they go through treatments - inhalations, physiotherapy and quite a few pills. We can now talk about healthy children who have a disease."
CF, when treated properly, has transitioned from a fatal childhood disease to a chronic condition. Managing such a complicated illness that impacts many organ systems in the body is no small feat. The CF patient is required to ingest numerous pills with each meal to aid digestion; to fight ongoing lung inflammation and infection through daily physiotherapy and antibiotic use; to do multiple inhalation treatments; and, a large number require daily insulin injections. They come to our center a minimum of once a month to monitor their health. This entails meeting our head nurse, performing lung function assessments, dietetic and nutrition status review, meeting with one of our CF lung specialists, meeting our GI specialist, and undergoing any other necessary diagnostic tests and treatments. They have to invest tremendous efforts to stay "normal". Today, more than half of people suffering from CF have attained adulthood, and this was reflected in our museum crowd. We had CF mothers and fathers coming with their healthy children to enjoy this event.
We are in the dawn of a new era with personalized medicine becoming a reality. Medications based on a person's genetic make up are available to about 25% of this patient body, with more being currently developed. Just as the bicycle revolutionized society, so too these new discoveries are transforming these patient's lives.
Our center at Hadassah is truly a unique center because it provides comprehensive treatment of diseases that require specialized knowledge in a large number of fields.The idea for such a place came from families that came to us with thick folders that included assorted letters from various doctors with absolutely no connection between them. Ultimately, the parents found themselves lost in a maze of bureaucracy, complicated medical problems, appointments scattered all over the calendar, and their ill child received sub-optimal care. We have created a one stop center where families arrive to meet with a number of specialists in one day, and then these specialists review the patient's file together to ensure nothing is overlooked. Essentially, we've built a world class, innovative model of a modern medical home that is patient-centered and not focused on the disease process alone. This is recognized today as an essential ingredient for quality care.
This event was a great success and we anticipate organizing many more like it in the future for our Hadassah family.
Help us continue our life-saving work.
Our Head Nurse, Shoshi Armoni, with one of our special families
Original Hebrew Article & Video Reference
The Israel Cystic Fibrosis Society Conference was held from Oct. 19 -21, 2017 at the Dan Caesarea Hotel on the Mediterranean Sea. This is an annual professional event that brings together scientists, clinicians, and caregivers from around Israel to meet and discuss topics related to Cystic Fibrosis. The latest advances in CF research, care, and drug development were explored, along with exchanging ideas about ways to improve the health and quality of life for people with CF. Two guest speakers were brought in from the USA and Europe to share their expertise.
Our center's director, Prof. Eitan Kerem, MD, as the chariman of the Israeli Cystic Fibrosis Society, put together a full schedule. The conference provided an opportunity to receive state-of-the-art continuing medical education and to learn about the latest advances in CF care in Israel and around the world. Our CF center staff participated alongside their co-professionals of the other Israeli CF centers at this once a year event. Hadassah doctors Alex Gileles–Hillel, MD, Malena Cohen-Cymberknoh, MD, and Prof. Michael Wilschanski, MD, along with physiotherapists Mr. Tomer Israeli, MSc., B.PT and Mrs. Iris Eisenstadt, MSc., B.PT made various presentations throughout the conference.