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Surviving Sickle Cell Anemia: THE JOURNEY SO FAR

-By Hauwa Muhammad Lawal

My name is Hauwa Muhammad Lawal and I suffer from a genetic disease called sickle cell anemia, for me this is my life, this is the reality of my world and I, like millions of others have been termed as “physically challenged. Often times I suffer from excruciating pains and have to be rushed to the hospital at ungodly hours. Most people describe the pain as if all their bones are breaking. Others describe it as an hourglass and their blood is “stuck.” The pain is so bad and sudden that people require high doses of opioids.

Patients suffering from recurrent episodes know what works for their pain, but some doctors and nurses take that knowledge as sign of addiction. Patients with sickle cell pain wait an average of 30 minutes longer for pain medication than people with other extremely painful conditions, such as kidney stones.

Pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to your chest, abdomen and joints, etc as seen in figure 1.

The pain varies in intensity and can last for a few hours to a few weeks.

There has been progress though. People didn’t use to live to be adults. Kids would die of stroke or of really bad infections before they were 20, and in some countries they still do. The fact that we have adults, people of 90 years of age is a good thing. Living with sickle cell disease can be hard, especially for children and also the poor because of the constant hospital trips.

People who are in pain often may have problems with anxiety and depression. They may feel singled out or left out of things others enjoy because of their condition. These feelings can add to other problems the disease can cause.

If you feel stressed, sad, or overwhelmed, counseling or psychotherapy may be able to help. Talking about your problems with a mental health professional can help you find reliable, healthy ways to handle pain and other challenges of sickle cell disease.

I have tried a lot of traditional herbs and also medically approved drugs but none has worked, but there’s a particular supplement that seems to be working so fingers crossed.

Most of the time, over-the-counter pain medicines like aspirin, diclofenac or ibuprofen can ease pain from an episode. (People under age 19 should not take aspirin, though.) There are some other things that may help, too:
 Drink water or other fluids like water melon or sugarcane when your symptoms start. Staying hydrated can help you head off the worst of an attack.
 Use a heating pad or take a warm bath.
 Try a massage, acupuncture, or relaxation techniques.
 Do something to take your mind off your pain. Watch TV, listen to music, or talk on the phone.

There are many misconceptions about this disease some of which are:
 Only Black people suffer from Sickle Cell Disease.
 Sickle Cell Disease is a contagious blood-borne disease like HIV and Hepatitis B.
 All red blood cells have the same properties.
 People with the Sickle Cell Disease are immune to malaria.

Sickle Cell Disease is very painful and can cause severe pain crises in patients and also a lot of complications which are:
 Stroke. A stroke can occur if sickle cells block blood flow to an area of your brain.
 Acute chest syndrome.
 Pulmonary hypertension.
 Organ damage.
 Blindness.
 Leg ulcers.
 Gallstones.
 Priapism.

As we all know, September is “sickle cell awareness month“ so let’s all join hands and stop this disease from spreading and create more awareness on it.

I believe the society will be a better place if we can all learn to live with people with disabilities and stop the stigmatization.

Government, schools, and we as individuals need to be educated on genotype testing and above all stop the marriage between two carriers of the “S” gene.

To all the warriors out there, keep fighting!