What every ‘Sickle Cell Warrior’ must know about their patient journey

September 30, 2021

As you try to maintain consistent wellness when dealing with sickle cell disease, it is imperative that you navigate the Patient Journey Roadmap by making five key stops to living the best life possible.

Having a chronic illness such as sickle cell disease means understanding all the ways you must take control of your life and not let the disease take control of you.

For sickle cell patients, managing your pain crisis is the number one priority.

The first stop on the roadmap is:

Awareness

A sickle cell patient must understand their condition. They must know all there is to know about the disease and how to manage it.

Understand your pain triggers. Know what foods increase your immunity. Realize the role exercise plays in your treatment and how much you can handle.

Recognize how much stress you can tolerate. Find the medicine that works best for you. Always be aware of the latest drugs and treatments that come to market and research them to see if it is something you want to try.

For example, Adakveo is the new infusion drug designed specifically for pain management. It is taken once a month and ensures relief from your pain until the next infusion.

Fulfillment

Always be curious about your disease. Whenever you have questions, ask your healthcare provider (HCP). When you are scheduled for a visit with your HCP, be ready. Have your questions written down.

If you hear about a new drug or treatment, ask about it. If they don’t know the answer, ask if you can be 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 need.

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.

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