Living well with sickle cell: everyday habits people talk about

Start with your care team

Every habit below starts in the same place. NHLBI says it is important to work with your healthcare team on a treatment plan and stick with it. The association's site says the same thing in its own words: having a care team you know and trust is crucial to navigating life with sickle cell.

NHLBI also recommends seeing your healthcare provider regularly and asking about routine vaccines, which can help protect against infections. How often you go, and which vaccines you need, are questions for your own provider.

Plan for a pain crisis before it happens

NHLBI suggests setting up a pain action plan with your healthcare provider ahead of time, so you are prepared when a pain crisis hits. Write it down, keep it somewhere easy to find, and make sure the people around you know where it is.

Everyday habits

NHLBI lists several habits that help: learning to manage stress, which it calls an important and common trigger; getting enough good quality sleep; staying active at a level your provider says is right for you; and choosing heart-healthy foods. It also advises avoiding situations that may set off a crisis, such as extreme heat or cold, sudden changes in temperature, and dehydration.

None of these is a cure, and none replaces your treatment plan. They are the everyday side of living well, and they are easier with support.

Take care of your mental health

NHLBI encourages people to talk to family and friends about how they are feeling, and to talk to a provider about feelings of depression or anxiety, where supportive counseling can help. Sickle cell can feel isolating. The association's weekly online support group, run with Leebo's Sickle Cell Support Group, exists so that nobody has to carry it alone.

The association's events are another way in. It hosts 5K fundraisers, support groups and community events, in person and virtual, with events for every age.

Getting the care you need

NHLBI notes that many people living with sickle cell disease have difficulty getting the care they need, and that stigma, bias and discrimination can make people delay care. If you are struggling to find the right doctor or specialist, the association offers medical referral assistance for specialized services, consultations and general medical support.

If money is the barrier, its emergency financial assistance helps with utilities, prescriptions and food, with medical documentation of sickle cell disease required. Read the full NHLBI guidance on living with sickle cell disease, and call the association at 913-735-2622, Monday to Friday from 10 am to 4:30 pm CT.