03 October 2019
Improving musculoskeletal (MSK) care and establishing a MSK-registry to collect outcome date
Egyptian Society of Hemophilia, Cairo
Prof Dr Adly Sabour, Prof Dr Magda Rakha, Prof Dr Magdy El Ekiaby, Dr Isis Morad, Dr Sonia Adolf and Mr Tamer Hasan
2 years, Q1 2016 - Q4 2017
Haemophilia care in Egypt is improving, but there is still a long way to go. Through a previous NNHF project, Egypt has developed stronger care capability in Cairo and some of the other major cities. But when you look beyond the population centres, you will find significant differences in awareness, education, diagnostic capability, and skilled care providers. There is also a lack of knowledge in the application musculoskeletal (MSK) care to people with haemophilia.
More and more data are showing that MSK care is a critical component to improving overall haemophilia care. Stop a bleed and you have addressed an immediate problem. Improve MSK care and you are addressing long-term quality of life. MSK care addresses mobility, independence, quality of life, and bleed prevention
In a country of nearly 100 million people, less than 6,000 people with haemophilia had been diagnosed in 2016
With a focus on improving haemophilia, a dedicated team led by Prof
Dr Magda Rakha, Prof Dr Magdy El Ekiaby and Prof Dr Adly Sabbour, set
out to improve the situation with a second project in Egypt. Over 24
months, this is what the Egypt 2 project team was able to
· They established 6 physiotherapy clinics to provide the critical MSK therapy that leads to improved joint function and helps prevent bleeds
· Organised 3 workshops introducing the project into new areas of the country and trained healthcare professionals in basic haemophilia care
· Printed 1,000 physiotherapy training booklets (in both English and Arabic) and distributed them throughout Egypt
· Installed 2 “shockwave” devices – an innovative procedure which was tested by the Egypt 2 team. The procedure was found to be effective in improving joint mobility and reducing flex deformities in people with haemophilia
“Using shockwave therapy, a noninvasive procedure, I witnessed incredible, long-lasting improvements to joint mobility in people with haemophilia. It has raised the game at what we are able to achieve.”
- Prof Dr Adly Sabbour, physiotherapist, Cairo
A sustainable leap forward has been made in Egypt by the Egypt Society of Haemophilia (ESH) led by Prof Dr Magda Rakha, Prof Dr Magdy El Ekiaby, Prof Dr Adly Sabbour.
This inspiring community is continuing to work on improving haemophilia care in the country. The NNHF Egypt 3 project was approved by the NNHF Council in March 2018 and the project team is moving forward to establish a national online bleeding disorders registry, to improve care provided in the regions, and to empower youth to ensure the ESH succession planning.