Your sickle cell disease story

Transcription

1 YOUR STORY Not actual patients. Your sickle cell disease story From the very beginning of sickle cell disease (SCD) to your role in the next chapter Visit GenSickleCell.com to get involved with the movement.

2 Before your story began SCD was discovered over a century ago 1910 SCD is first discovered and described as sickle-shaped cells in a patient s blood Additional cases are discovered. SCD becomes a new, distinct disease Researchers learn that abnormal hemoglobin, a protein in blood that delivers oxygen throughout the body, changes the shape of red blood cells from discs to sickles Researchers learn the disease is inherited. SCD occurs when someone inherits 2 copies of the sickle cell gene, 1 from each parent The Sickle Cell Anemia Control Act of 1972 opens research and treatment centers around the United States. Doctors continue to gain new understanding of the disease.

3 1979 The National Heart, Lung, and Blood Institute (NHLBI) starts the Cooperative Study of Sickle Cell Disease. In-depth research about SCD begins Researchers discover that sickled red blood cells stick to blood vessel walls and block blood flow Hydroxyurea, bone marrow transplant, and penicillin are first found to impact SCD Forty-four states require screening of newborns for SCD The first treatment for SCD is approved by the US Food and Drug Administration The Sickle Cell Disease Clinical Research Network is started by the NHLBI. Visit GenSickleCell.com

4 Nearly 100,000 people in the United States share your story

5 3 TOP SCD patient populations: Florida, New York, Texas While SCD disproportionately affects African Americans, nearly every ethnic population is affected 55 % of patients with SCD in just 10 STATES Visit GenSickleCell.com

6 The science behind your story Sickle cell disease is a blood disorder, that you are born with, which affects the shape of your red blood cells. Sickled red blood cells do not live as long as healthy ones, and your body has a hard time replacing them. That is why you may experience anemia. But this is just part of the story. Red blood cell Other blood cells Clusters can form 1 2 STICKINESS Your blood vessels can become damaged, causing blood cells and blood vessels themselves to become sticky. CLUSTERS The shape and stickiness of the blood cells in SCD make them more likely to get stuck to one another, forming clusters in the bloodstream.

7 Other blood cells Flow is blocked Pain crises & damage to organs 3 4 BLOCKAGES These clusters can block blood and oxygen flow. PAIN CRISIS When blood cell clusters get big enough, they can cause a full blockage that can lead to a pain crisis possibly causing severe, debilitating pain. Over time, these crises may lead to other chronic health issues, including damage to your organs. Visit GenSickleCell.com

8 Every story is unique SCD causes different symptoms in different people Blood vessel damage may lead to other health issues, including: PAIN CHEST COMPLICATIONS ORGAN DAMAGE BONE INJURY STROKE The burden of SCD may lead to feelings of anxiety or depression.

9 Take control of your story TIP: It is important to talk to your doctor about your SCD symptoms and concerns. Talking openly and frequently with your care team can help them manage your SCD. Visit GenSickleCell.com

10 You can shape your story Remember that staying healthy means taking care of both your body and your mind. TIP: If SCD interferes with your social life, be prepared so you can keep your plans. For example, if cold weather triggers your pain, pack extra clothes to stay warm. Many people are not aware of SCD. That can affect the type of care you receive. We want to improve care for all people with SCD by sharing real SCD stories. TIP: It is important to talk to your doctor about your SCD symptoms and concerns. Talking openly and frequently with your care team can help them manage your SCD. Remember that you re not alone. Reach out to family, friends, or other sources of support for help with handling the emotional and social aspects of SCD.

11 It s time to change the story Improving life with SCD Better care Specialized SCD care can reduce the number of emergency visits, shorten hospital stays, and lower care costs New developments Advances in health care strategies will continue to provide more options for people with SCD Visit GenSickleCell.com

12 Your story, your future : Writing the next chapter Tips that can help you stay ahead of your disease TIP: Regularly visit your SCD doctor. TIP: Wash your hands, eat safely prepared food, and get vaccines to avoid getting sick. TIP: Drink 8 to 10 glasses of water a day, and eat healthy foods. TIP: Get plenty of rest, and work with your doctor to develop an exercise plan that works for you. TIP: Join a support group to get and share tips about living with SCD. SCD affects each person differently. It is important to find a care team that can provide a plan that meets your needs. Help shape the conversation, and increase awareness about SCD for generations to come, by sharing your story at GenSickleCell.com Novartis Pharmaceuticals Corporation East Hanover, NJ Novartis 8/18 SDC