directed to someone who does. Be your own advocate.
If you begin to feel your doctor does not have your best interest at heart and your concerns are not being heard, find another healthcare provider that makes you feel like they care.
ACCESS
Learn all you can about the healthcare system, especially what directly affects you. Navigating the healthcare system can be daunting, so ask family and friends to assist you if life becomes overwhelming, because the last thing a sickle cell patient needs is stress.
Find out how to leverage affordable drugs through programs and grants. There are many prescription discount programs available. Research the one that best fits your needs.
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ONBOARDING
Get comfortable with your treatment. If you are trying a new drug or treatment, talk to your doctor about what to expect. Discuss what changes may occur.
Will there be side effects, and if so, what should you look out for? If you find that you must go to the emergency room, what will you need to bring?
ONGOING COMPLIANCE
It’s vital that you stay on your regimen. No half doses, no skipping doses. Stick to your nourishment plan. Talk about any depression or anxiety you feel.
Find sickle cell support groups that have people to commiserate with that know what you are going through. These support groups can be excellent resources to help you traverse the sickle cell landscape.
Always keep your healthcare provider in the loop. They are your first line of defense.
It is critical for patients to stay the course on the Patient Journey Roadmap. You are the driver on this healthcare journey. If you make each stop a priority, you are on track to living the best life possible!