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The hope for a future where we can one day live unlimited means having choices. It means gaining moments that belong to you, not sickle cell disease (SCD). It means being able to show up for yourself and your community without hesitation.
Cadence (age 17) lives with sickle cell disease, and her mom
The hope for a future where we can one day live unlimited means having choices. It means gaining moments that belong to you, not sickle cell disease (SCD). It means being able to show up for yourself and your community without hesitation.
From the moment you were diagnosed, the world tried to put limits on what you can and can’t do while living with sickle cell disease. Some came from love, some came from fear, and some were for your benefit. But regardless of what people said to you, you kept on fighting. You kept on living.
Every time you have a sickle cell crisis, it brings stress on your organs, which can lead to damage to both your organs and the tissues in your body. So if I want to keep that from happening, I have to stay on top of things.
—Shirley (age 69) lives with sickle cell disease and is a Novo Nordisk consultant
For those new to this, sickle cell disease is a rare genetic disease that affects how red blood cells work in the body. Healthy red blood cells are round and flexible to help carry oxygen throughout the body. In sickle cell disease, red blood cells become rigid and curved like a “C” or a sickle. This can trigger crises, also known as vaso-occlusive pain crises, which you may know all too well. Over time, more blockages may mean more damage to vital organs throughout your body. Reducing blockages may mean reducing the number of crises.
Keeping an open dialogue with your provider about what is happening inside your body is critical. Also, the more you can follow your care plan, the more you’re able to protect your red blood cells and may help prevent damage to vital organs over time.
Stay educated and partner with your provider(s) to understand what is going on in your body to help protect yourself to keep on your journey for living better.
Bethany (age 17) lives with sickle cell disease, and her mom
Bethany (age 17) lives with sickle cell disease, and her mom
For over 100 years, Novo Nordisk has been dedicated to healthcare, and for over 35 years, we’ve been improving the lives of people living with rare diseases and blood disorders.
We want to partner with the SCD community to help build capabilities that improve access to comprehensive care. Among other things, we are supporting recommendations to help raise the global standards of SCD research.
Shirley (age 69) and Terry (age 31) live with sickle cell disease. Shirley is a Novo Nordisk consultant
Shirley (age 69) lives with sickle cell disease and is a Novo Nordisk consultant
for community support because your diagnosis doesn’t define you.