A Life Rewritten: KFSHRC Treats Rare Disease After 22 Years of Specialized Care
When the early signs of illness appeared during the patient's first months of life, KFSHRC teams raced against time to stabilize her condition. She was diagnosed with a congenital deficiency in plasminogen, a protein essential for dissolving blood clots, resulting in fibrous deposits that posed serious threats to her tissues and organs.
The complexity of her case posed both medical and quality-of-life challenges, requiring a comprehensive, multidisciplinary care system. This extended beyond medical treatment to include all facets of life-supporting care. Teams from nursing, nutrition, and information technology joined hematology and transplant specialists to ensure the young girl's well-being.
In a reflection on the early days, the patient's father said: 'My daughter suffered from the moment she was born. She cried constantly and couldn't nurse. We lived in continuous worry with no clear answers until God opened a door of hope. Today, thanks to God first, and then to the remarkable healthcare capabilities provided by the Government of the Custodian of the Two Holy Mosques and His Royal Highness the Crown Prince, may God preserve them, we witness our daughter's recovery from this rare disease after two decades of struggle.'
Throughout the years of treatment, the patient relied on regular intravenous doses of plasminogen, along with eye drops to reduce the disease's effect on her vision. The annual cost of treatment exceeded 6 million SAR, fully covered by the Saudi government. This reflects the Kingdom's profound commitment to human health and its investment in quality of life even in the most complex medical cases.
Dr. Hazzaa Al-Zahrani, Director of Adult Hematology and Stem Cell Transplant Division at KFSHRC Riyadh and the supervising physician, explained that managing the case required a precise and long-term approach to prevent complications and ensure stability. The decision to proceed with a liver transplant came after careful consideration as an extraordinary therapeutic option for an exceptionally rare case. The success of the procedure marked a turning point in her medical journey and a beacon of hope for patients facing similar conditions worldwide.
This approach is deeply rooted in the vision of King Faisal Specialist Hospital & Research Centre, which places the patient at the core of every practice and is committed to delivering integrated care where scientific expertise meets human compassion, in line with its mission to serve society at the highest standards.
For more information, visit www.kfshrc.edu.sa or contact our media team at [email protected]
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Gulf Today
20 hours ago
- Gulf Today
Dermatology campaign to focus on eczema prevention
A genetically-induced skin disease, commonest in boys and women shall be the centrepiece campaign of dermatologists in the UAE and a Saudi-Arabia-headquartered pharmaceutical firm, this academic year until July 2026. The partnership between the Emirates Dermatology Society (EDS) and the Jamjoom Pharma, which has branches in Dubai and Cairo, Egypt, was formalised with the July 4 signing of the Memorandum of Understanding (MoU) in the capital, way ahead of the 'ECZPLORE' September launch. It is 'ECZPLORE' because the campaign is about eczema. EDS president Dr. Ayman Al Naeem told Gulf Today on Friday: 'Eczema has become one of the most pressing skin health issues in the UAE. It affects one in five children and often gets worse, because of the heat, the humidity and the air-conditioning; generally our climate.' Referring to the EDS data, when enquired regarding the youngest and oldest patients, the gender ratio, and the prevalence in the country's multi-racial landscape, Al Naeem said: 'The condition can appear as early as the first few weeks of life, although such an early onset is rare.' Rare too, it is, among septuagenarians and octogenarians who have been found to also be suffering from the disease, which counts 'environmental factors' namely 'allergens, climate, stress and irritants,' particularly those with 'family history and mutations in skin barrier genes like filaggrin,' a protein – a as a cause. These, as in the 'Atopic Dermatitis Insights on Global Prevalence, Health Care Implications and the Impact of COVID-19,' Kyung Hee University College of Medicine (Seoul, South Korea) medical student-researcher Jiyen Oh, noted that by 2050, global incidence would be at 148 million cases 'with minimal change in the prevalence rate.' The research was published in 'The Lancet Respiratory Medicine.' Oh studied the co-relation of eczema, otherwise known as Atopic Dermatitis, with asthma and COVID-19. Oh wrote that the skin disease shall have higher incidences in 'high-income countries likely influenced by environmental factors, urbanisation and better diagnostic capabilities.' Al Naeem pointed out that a campaign is crucial because 'beyond the skin, eczema affects how children sleep, play, learn and interact. For many families, it is a daily emotional and physical struggle.' Jamjoom Pharma-Gulf/Levant/Export Markets general manager Dr. Samer Lezzaiq said they are looking forward at partnerships with relevant authorities and educational institutions even as 'five major schools across the five largest cities in the UAE will be targeted.' 'This campaign is a national call to action designed to reach over one million individuals through digital platforms, schools and on-ground events,' Lezzaiq added, stressing that these are necessary; for, apart from the basic general knowledge, 'guidance on lifestyle modifications' are key to help patients and their households. 'Selection of the five major schools will be randomised. Primary targets are children between two and 12 years old,' said Lezzaiq. He answered in the negative when asked if secondary and tertiary educational institutions were included, as teenagers and young adults may be eczema sufferers as well: 'The age group most affected are the ages two and 12. Secondary schools, colleges, and universities fall outside of the current scope.' From Al Naeem: 'The highest prevalence is typically seen during childhood. In terms of gender distribution, it is more common in boys. This trend shifts in adulthood, with a higher prevalence observed in women.' He repeated Lezzaiq's mention of alterations in lifestyle, pointing out that while 'eczema is not fully preventable, its onset and flare-ups can be significantly reduced' through stress management, early treatment, avoiding triggers, and maintaining a healthy skin barrier with the use of breathable clothing and moisturisers to protect the skin barrier. Other highlights of the MoU, the signing of which was witnessed by EDS vice president Dr. Muna Al Murrawi and EDS-Scientific Committee head Dr. Fatima Albreiki: n The delivery of educational tools which include colouring books to help understand their condition while storybooks foster empathy and hope. n The delivery of lifestyle magazines and quick guides for families, caregivers and other support individuals to complete lifestyle modification among the patients. n The delivery of resources and other materials for healthcare professionals.
Web Release
4 days ago
- Web Release
A Life Rewritten: KFSHRC Treats Rare Disease After 22 Years of Specialized Care
In a rare example of a lifelong bond between a patient and a healthcare institution, King Faisal Specialist Hospital & Research Centre (KFSHRC) in Riyadh has continued to support a patient since infancy, providing 22 years of continuous care for a rare genetic blood clotting disorder, ultimately culminating in a liver transplant—the first of its kind globally for this particular condition. When the early signs of illness appeared during the patient's first months of life, KFSHRC teams raced against time to stabilize her condition. She was diagnosed with a congenital deficiency in plasminogen, a protein essential for dissolving blood clots, resulting in fibrous deposits that posed serious threats to her tissues and organs. The complexity of her case posed both medical and quality-of-life challenges, requiring a comprehensive, multidisciplinary care system. This extended beyond medical treatment to include all facets of life-supporting care. Teams from nursing, nutrition, and information technology joined hematology and transplant specialists to ensure the young girl's well-being. In a reflection on the early days, the patient's father said: 'My daughter suffered from the moment she was born. She cried constantly and couldn't nurse. We lived in continuous worry with no clear answers until God opened a door of hope. Today, thanks to God first, and then to the remarkable healthcare capabilities provided by the Government of the Custodian of the Two Holy Mosques and His Royal Highness the Crown Prince, may God preserve them, we witness our daughter's recovery from this rare disease after two decades of struggle.' Throughout the years of treatment, the patient relied on regular intravenous doses of plasminogen, along with eye drops to reduce the disease's effect on her vision. The annual cost of treatment exceeded 6 million SAR, fully covered by the Saudi government. This reflects the Kingdom's profound commitment to human health and its investment in quality of life even in the most complex medical cases. Dr. Hazzaa Al-Zahrani, Director of Adult Hematology and Stem Cell Transplant Division at KFSHRC Riyadh and the supervising physician, explained that managing the case required a precise and long-term approach to prevent complications and ensure stability. The decision to proceed with a liver transplant came after careful consideration as an extraordinary therapeutic option for an exceptionally rare case. The success of the procedure marked a turning point in her medical journey and a beacon of hope for patients facing similar conditions worldwide. This approach is deeply rooted in the vision of King Faisal Specialist Hospital & Research Centre, which places the patient at the core of every practice and is committed to delivering integrated care where scientific expertise meets human compassion, in line with its mission to serve society at the highest standards. For more information, visit or contact our media team at [email protected]
Zawya
4 days ago
- Zawya
A Life Rewritten: KFSHRC treats rare disease after 22 years of specialized care
In a rare example of a lifelong bond between a patient and a healthcare institution, King Faisal Specialist Hospital & Research Centre (KFSHRC) in Riyadh has continued to support a patient since infancy, providing 22 years of continuous care for a rare genetic blood clotting disorder, ultimately culminating in a liver transplant—the first of its kind globally for this particular condition. When the early signs of illness appeared during the patient's first months of life, KFSHRC teams raced against time to stabilize her condition. She was diagnosed with a congenital deficiency in plasminogen, a protein essential for dissolving blood clots, resulting in fibrous deposits that posed serious threats to her tissues and organs. The complexity of her case posed both medical and quality-of-life challenges, requiring a comprehensive, multidisciplinary care system. This extended beyond medical treatment to include all facets of life-supporting care. Teams from nursing, nutrition, and information technology joined hematology and transplant specialists to ensure the young girl's well-being. In a reflection on the early days, the patient's father said: 'My daughter suffered from the moment she was born. She cried constantly and couldn't nurse. We lived in continuous worry with no clear answers until God opened a door of hope. Today, thanks to God first, and then to the remarkable healthcare capabilities provided by the Government of the Custodian of the Two Holy Mosques and His Royal Highness the Crown Prince, may God preserve them, we witness our daughter's recovery from this rare disease after two decades of struggle.' Throughout the years of treatment, the patient relied on regular intravenous doses of plasminogen, along with eye drops to reduce the disease's effect on her vision. The annual cost of treatment exceeded 6 million SAR, fully covered by the Saudi government. This reflects the Kingdom's profound commitment to human health and its investment in quality of life even in the most complex medical cases. Dr. Hazzaa Al-Zahrani, Director of Adult Hematology and Stem Cell Transplant Division at KFSHRC Riyadh and the supervising physician, explained that managing the case required a precise and long-term approach to prevent complications and ensure stability. The decision to proceed with a liver transplant came after careful consideration as an extraordinary therapeutic option for an exceptionally rare case. The success of the procedure marked a turning point in her medical journey and a beacon of hope for patients facing similar conditions worldwide. This approach is deeply rooted in the vision of King Faisal Specialist Hospital & Research Centre, which places the patient at the core of every practice and is committed to delivering integrated care where scientific expertise meets human compassion, in line with its mission to serve society at the highest standards.
