Living with Sickle Cell Disease (SCD)

For thousands of Americans, living with sickle cell disease means a lifetime of painful episodes, blood transfusions and frequent trips to the hospital. These treatments can often cause complications that are just as bad or worse than the effects of the disease itself.

Sickle cell disease (SCD) is an inherited genetic disorder that affects red blood cells. The presence of Hemoglobin S, an abnormal hemoglobin, causes these blood cells to change into the shape of a sickle and makes it difficult for them to pass through small blood vessels. When these vessels become blocked, oxygen has trouble reaching the tissues since hemoglobin is an oxygen carrying molecule.Tissue that does not receive normal blood flow often becomes damaged, including tissue of the lungs, spleen, liver and kidneys.

Living with sickle cell disease is painful and can inhibit a person from living a normal life. Too much activity can cause a pain crisis and stroke. Currently the main treatments for SCD are blood transfusions, which can cause toxic build up of iron, and antibiotics to prevent infections caused or worsened by damage to the spleen, pain management, and surgery. Each of these treatments causes more complications. Even with multi-disciplinary treatments, the average life expectancy for someone who suffers from SCD is only about 40-to-45 years.

Comments

  1. We do have treatments for sickle cell and it is natural extracts mixed with special type of honey.Even it is genetic but the patient can live in a normal life .We treated many patients in the gulf region and Nigeria as well.

    • Sam Poaches Jr says:

      Bill, if what you say is true. Why is this information not available to all who are living with this disease? I have read this article and what is being said about the life expectancy for SCD is false. I have SCD and I am 56 years old. I know of those with this disease who have lived way into their 60′s and above. I also know that some with this disease who have lived to see 15 years of life. It is my opinion that information about treating SCD is not being shared. You state “We treated many patients in the gulf and Nigeria as well.” nIf this is true. Why is this information not available to every doctor who treat patients living with SCD? My reading what you have to say makes me angry. Due to the fact that you have information that may help someone and you are keeping this information to yourself and not helping all who are living with this painful disease.

      • Hi Sam, knowing that there are people out there living with this condition as long as you have, is such a relief. My son is only 14 months old and was only diagnosed with SCD 3 months ago. I’m in the process of trying to learn about SCD.

    • Hi Bill, I’m curious about these treatments you’re talking about. Could you expand on this? When you say ‘the gulf’, where exactly do you mean? I’m jut trying to see if it would be in a place close to where I am and if I can access this treatment you’re talking about, for my son.

  2. I believe there should be more information about the cure, prevention and management of the disease. I hope one day there will either be very few cases of the disease or none at all.

  3. Mae Jane says:

    My mom has sickle cell and she is 49

  4. HI EVERYONE, MY DAUGHTER WAS 5DAYS OLD WHEN SHE WAS DIAGNOSED WITH SCD. I STOP BREATHING FOR A MOMENT WHEN I HEARD THE NEWS. I JUST THOUGHT OF EVERY HEALTH PROBLEMS SHE HAS TO GO THROUGH. I NOW MONITOR HER CLOSELY. SHE TAKES HER PCN VK TWICE A DAY AND VISIT HER HEMATOLOGIST REGULARLY. I JUST WANT HER TO BE CURE.

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