It's published!
A guide to living with sickle cell compiled by the red cell network with support from patient advocates. This guide is filled with vital information for all those affected by the condition and their carers and loved ones.
The Red Cell Network: Living with Sickle Cell - Information Guide
I am so happy I can finally announce that the guide is published and that I was able to contribute and provide the patient perspective and insight, This guide was a real labour of love from all involved, but it was worth it.
Living with sickle cell is complex and varied because it is a group of disorders, all of which have more prevalent symptoms than others. Symptoms of sickle cell disorder (SCD) can come and go. Most people have bouts of symptoms but they generally feel well between the episodes. There are also many symptoms that people with SCD live with day-to-day including fatigue, eye problems and musculoskeletal pain.
The reason that symptoms come and go is that the red blood cells can behave normally for much of the time. When they become sickled, they can clump together or stick to the sides of blood vessels. This can block the blood vessels and cause severe pain and sudden onset of various symptoms. This is called vaso-occlusive crisis (crisis).
In this guide we cover areas that usually aren't included in information booklets such as:
Preventing sickle cell crises and available treatment options
What other support is available for people living with SCD?
Additional help and guidance - including travel, relocating, employment, careers information and government support.
Remember that a person living with sickle cell can look like any of these at any point in the day:
The Red Cell Network: Living with Sickle Cell - Information Guide
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