Support in your area
Living with a chronic condition can sometimes feel lonely – but you're not alone. We recommend that you reach out to other people with sickle cell disease. These people can best understand how you are doing, as they have gone through the same things. It may help you to hear about how they manage their everyday lives with sickle cell disease. You can learn from the experiences of others and also share your own. This way, you can all help each other to grow.
Many people use social media to find support in their area. There are even people with sickle cell disease who start their own groups on social media so they can network with other patients. Other people with sickle cell disease may be able to recommend specific social media sites to you. You can also ask your treatment team or a patient organisation whether they know any social media sites dealing with sickle cell disease.
Being part of a community can have a positive impact on your life with sickle cell disease. Listening to stories from others can help you to shape your own life.
Patient organizations for sickle cell disease, thalassemia and all rare diseases
My sickle cell disease self-help group meets every month. It is a meeting where people with the disease and caregivers come together to talk about their experiences; they hold annual dance events to raise money and they also organise trips each year. Although the group has done lots of work to raise awareness of the disease, it was primarily a self-help group for the patients and caregivers in the group.
You can learn a lot from other parents; we have a WhatsApp group. If a child has a symptom, for example, the parents post in the group. There may be someone in the group who has had the same experience and can share the approach they took.
I follow accounts of people who either have sickle cell disease or who know people with the disease and who talk in simple terms about their experiences.
Vertex Pharmaceuticals (Germany) GmbH would like to mention that this website was produced with the support of people with sickle cell disease from patient organisations and the European Sickle Cell Federation in its capacity as a contractual advisor to Vertex Pharmaceuticals (Germany) GmbH.
- Top tips for self-management
- Your wellbeing diary
- Set targets that work for you
- Get the most out of your medical appointments
