{"id":855,"date":"2023-02-23T10:11:54","date_gmt":"2023-02-23T10:11:54","guid":{"rendered":"https:\/\/mft.staging.every1preview.co.uk\/hcc\/?page_id=855"},"modified":"2025-02-06T16:13:41","modified_gmt":"2025-02-06T16:13:41","slug":"new-to-haemoglobinopathy","status":"publish","type":"page","link":"https:\/\/mft.nhs.uk\/hcc\/clinical-zone\/education\/new-to-haemoglobinopathy\/","title":{"rendered":"New to Haemoglobinopathy?"},"content":{"rendered":"

[vc_row][vc_column][vc_column_text]<\/p>\n

Raising Awareness Package – Non Clinical Workforce<\/h2>\n

It has been highlighted that we need to raise awareness of sickle cell amongst our non-clinical patient facing<\/strong> workforce. As a result of complaints regarding patient experience and outcomes across urgent care services we have created an awareness package for administration staff who are often the first point of contact for many of our patients and their support network.<\/p>\n

The aim of this presentation is to increase awareness and empower staff to have the knowledge to understand, empathise and act. <\/strong><\/p>\n

The presentation provides information explaining what sickle cell is, common symptoms of crises and complications, when to act, how they can help and further reading.[\/vc_column_text]\n \n \n \n<\/svg>\n\n <\/span>\n Raising Awareness Package - Urgent Care - Administration Workforce\n<\/a>\n[\/vc_column][\/vc_row][vc_row][vc_column][vc_separator][vc_column_text css=””]<\/p>\n

Educational Videos<\/strong><\/h2>\n

Disclaimer: Note that the following educational videos are from external content creators<\/strong><\/span>
\n<\/strong><\/p>\n

These videos will help you learn more about haemoglobinopathies. Click on the links below or scroll down to a video.<\/strong>
\n1. Sickle cell – what it is and associated stigma<\/a>
\n2. Sickle cell – patient perspectives<\/a>
\n3. What is Thalassaemia?<\/a>
\n4. What is Gene Editing?<\/a>
\n5. RIA – Diamond-Blackfan Anaemia<\/a>
\n6. RIA – Congenital Sideroblastic Anaemia<\/a>
\n7. Red Blood Cell Life Cycle<\/a>
\n8. Haemochromatosis (Iron Overload)<\/a>
\n9. Aplastic Anaemia<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css_animation=”fadeInUp”]<\/p>\n

Sickle Cell<\/u><\/strong><\/h2>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=”scd_bbc_africa”][vc_column][vc_column_text]Sickle cell: I didn’t know I had the disease<\/strong>
\nA BBC News feature on what sickle cell is, the pain suffered, treatment and the stigma.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/MlUFqDiy6wg”][vc_separator][\/vc_column][\/vc_row][vc_row el_id=”scd_bbc_stories”][vc_column][vc_column_text]Sickle cell: Why is it hard to talk about our pain?<\/strong>
\nThis second video, from BBC Stories, speaks to patients about why it is difficult to talk about their pain and also raises the importance of blood donation.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/63pgiclvChc”][vc_separator][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css_animation=”fadeInUp”]<\/p>\n

Thalassaemia<\/u><\/strong><\/h2>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=”what_is_thal”][vc_column][vc_column_text]What is Thalassaemia? <\/strong>
\nA video giving an overview of thalassaemia – the symptoms, causes, diagnosis and management of this disorder.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/JxuupecxHO8″][vc_separator][\/vc_column][\/vc_row][vc_row el_id=”gene_editing”][vc_column][vc_column_text css=””]<\/p>\n

What is Gene Editing?<\/h2>\n

Gene editing has been approved as an NHS treatment in England for certain patients with sickle cell and thalassaemia. This significant advancement offers hope to those affected by these serious conditions. While gene editing is a complex field, this short video provides a basic overview of how it works. Note – the Ted Ed video below explains it using the DNA editing technology CRISPR.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/6tw_JVz_IEc?si=BhW52hiDBwFHR–t” css=””][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css_animation=”fadeInUp”]<\/p>\n

Rare Inherited Anaemias<\/u><\/strong><\/h2>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Unfortunately, just as these anaemias are rare, so are videos that discuss them.\u00a0 However, we have found these RIA videos, aimed at medical students, that look at these conditions from a more theoretical perspective.[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=”ria_dba”][vc_column][vc_column_text]Diamond-Blackfan Anaemia (DBA)<\/strong>
\nThis video looks at DBA –\u00a0a rare blood condition where the bone marrow fails to produce enough red blood cells.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/yuGwQXMfAaQ”][vc_separator][\/vc_column][\/vc_row][vc_row el_id=”ria_sa”][vc_column][vc_column_text]Congenital Sideroblastic Anaemia (CSA)<\/strong>
\nThis video looks at CSA – an uncommon, diverse class of inherited hematopoietic disorders characterized by pathological deposition of iron in the mitochondria of erythroid precursors.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/4HH5nHtjb2w”][vc_separator][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css_animation=”fadeInUp”]<\/p>\n

Additional Related Information<\/u><\/strong><\/h2>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=”add_rbc_life”][vc_column][vc_column_text]Haematology – Red Blood Cell Life Cycle<\/strong>
\nAn animated explanation of the life cycle of an erythrocyte (red blood cell).[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/cATQFej6oAc”][vc_separator][\/vc_column][\/vc_row][vc_row el_id=”add_iron”][vc_column][vc_column_text]Haemochromatosis (Iron Overload)<\/strong>
\nAn animated explanation of iron overload – something that some of our haemoglobinopathy patients suffer from.[\/vc_column_text][vc_video link=”https:\/\/youtu.be\/hbs_GaWX5PI”][vc_separator][\/vc_column][\/vc_row][vc_row el_id=”add_aplastic”][vc_column][vc_column_text]Aplastic Anaemia <\/strong>
\nThis video discuses aplastic anaemia –\u00a0when the bone marrow doesn\u2019t make enough red and white blood cells, and platelets.<\/p>\n

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Blog<\/h2>\n

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