Why do chrildren with sickle cell disease have many problems with physical activity, where children are not able to play sports?


Children with sickle cell disease can generally exercise almost as much as other children. They have anemia so would have trouble playing football (soccer) or running long distance.  Exercise is not bad for children with sickle cell disease, with water to keep from becoming dehydrated they can play some sports.


With proper treatment and diet children in the United Kingdom have a 97% chance of living to the age of 18 years.  There are people with sickle cell anemia who go to college and have a job.  They still have pain and other problems, but they are able to have a productive life.


All people with sickle cell disease need medical care and sometimes counseling.  I would recommend both.



Can sickle cell patients really get "in shape"? Meaning successfully run regularly and lift weights?


It depends on what type of sickle cell disease you have, whether or not you are receiving chronic transfusion therapy, or hydroxyurea therapy; and whether or not you have complications of sickle cell disease.  As you might be aware, college level athletes with sickle cell trait have died from probable dehydration, muscle breakdown (rhabdomyolysis), and renal failure.  You can definitely over do exercise with sickle cell disease.  When exercising it is required that you maintain hydration: drink a lot of water.


Running. People with sickle cell disease are more likely to have asthma and pulmonary hypertension than those without sickle cell disease.  Asthma in people with sickle cell disease may not cause wheezing and shortness of breath with mild exercise or respiratory illness.  If you are planning on running you should have pulmonary function testing (should be routine if you receive care at a sickle cell center) and have a pulmonologist review the results and give you recommendations.  Severe pulmonary hypertension affects about 10% of people with sickle cell disease, less that severe pulmonary hypertension is associated with more severe disease, it can be a serious issue if you are exercising.  You should have an echocardiogram to determine if you have an elevated “Trjet”.  Not all cardiologists measure the Trjet with an echocardiogram, this is a standard screening test in sickle cell centers.  Ask your primary care provider or a hematologist for guidance about running; and request an echocardiogram.


If your baseline hemoglobin is low (7 to 8 g/dl or lower) you will not be able to run distance, your ability to transport oxygen is limited.  Walking is good cardio-exercise, you don’t have to be a distance runner.  Start slow and gradually work up; but remember you will not be able to compete with someone who has a hemoglobin of 15 g/dl (some male runners).


Weight training.  This is a possibility for many people with sickle cell disease.  You have to pace yourself, keep hydrated.  Do not exercise if you are experiencing pain.  The “No Pain, No Gain.” does not work with sickle cell disease, better to do more frequent lifts with a little less weight than try to see how much you can lift and for how long.



How can I stop feeling so tired and lethargic? I know part of it is due to my pain medicine, but how can I become more active without overdoing it?


There are a lot of reasons a person who has sickle cell disease might feel “tired and lethargic”. You should review all of your medications with your primary care provider, there could be medications you are taking (besides pain medicine) that have these side effects.  You should assess your diet and how much sleep you are getting, and whether you are getting “good” sleep at night. You should also ask yourself, “Am I tired and lethargic or am I sad and depressed?” It is a difficult question, but the symptoms of sadness are the same as being tired and having no energy.


Don’t overdo it with exercise.  One of the issues with sickle cell disease is: am I tired because I have anemia (low blood counts) or because I am out of shape.  You need to slowly build up to your tolerance with exercise.  Don’t join and gym and think you can run a mile overnight.  You should not exercise until you are breathless, just walking is good exercise.



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