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.
Contact with patient groups can be a great opportunity to meet people who are facing the same challenges as you, helping you to find support. In the French-speaking part of Switzerland, there is an association for patients with sickle cell disease: Suisse Drépano.
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.
“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 (CH) 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.
- Top tips for self-management
- Your well-being diary
- Set targets that work for you
- Get the most out of your medical appointments
