Find valuable support in your area
It’s hard to make your voice heard when it feels like yours is the only one. As well as getting support from your healthcare team, it can be helpful to join others in the sickle cell community so that you can support each other and share different ways of living with sickle cell disease. Often only people who have sickle cell disease really understand what it’s like to live with it.
Getting in touch with local patient groups, societies and organisations can be a great way to meet like-minded people, as well as find practical and emotional support.
Sickle Cell Society
The Sickle Cell Society support and represent people affected by sickle cell disease. Visit their website or get in touch with them for information about living with sickle cell disease, help and advice, as well as the details of local support groups.
In addition, there are support groups for people with sickle cell disease on social media. These might be set up by societies or more informal groups that people have joined by word of mouth. Many hospitals or healthcare teams will know about the groups and how to access them. So it’s worth asking your healthcare team as to whether they know of any support groups that you can join. Lots of people and their loved ones use these groups to share their experiences, get helpful tips and enjoy valuable support.
Being part of a community may help you feel confident to keep talking with your healthcare team and others around you – and to make your voice heard. You’re the biggest advocate for your own health. Learning about and sharing different ways of managing sickle cell disease with others who have it, could help you define how you want to live your life with sickle cell disease.
Meet John, who lives with sickle cell disease in the UK
Practical Support
How to get the practical help you need to manage your SCD along with education, work and other parts of your life
Practical Support
How to get the practical help you need to manage your SCD along with education, work and other parts of your life
Doing the right thing for you
Doing right by yourself to help you live with sickle cell disease.
Doing the right thing for you
Doing right by yourself to help you live with sickle cell disease.
Emotional Support
Looking after your mental wellbeing and building your emotional support network around you.
Emotional Support
Looking after your mental wellbeing and building your emotional support network around you.
My sickle cell support group meet every month. It is a patient and carer meeting where you talk about your experiences; they have yearly dances to raise money, yearly outings, and trips away. There was a lot involved in it to raise awareness. But also, it was more like a support group for the patients and the carers that were within the group.
You learn from other parents; we have a WhatsApp group. Say if a child is having a symptom, you put it on. Maybe there is somebody who has had that experience and how they dealt with it.
I follow accounts with individuals who either have sickle cell or know people who have sickle cell, and they just talk about their experiences.
Vertex would like to acknowledge this website was created with the support of individuals from the patient community, the European Sickle Cell Federation, who were acting as contracted consultants for Vertex.
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- Your wellness journal
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- Getting the most out of your healthcare appointments
