Deborah Chama has had a fair share of having pain attributed to living with sickle cell disease. I asked her to write an article on living with constant pain as a sickle cell warrior. Here is her article:

Pain can be described as an unpleasant feeling or sensation brought about by an injury to the body or disease/illness. Pain can either be physical or emotional.

Sickle cell disease is a group of blood disorders inherited from both parents who carry the sickle cell trait. Sickle cell results in an abnormality in the oxygen-carrying protein haemoglobin found in the red blood cells which results in the red blood cells being rigid or sickle cell shaped (which looks like a farm tool called a sickle). Due to the red blood cells being rigid, they easily get stuck in blood vessels, slowing or completely blocking easy blood flow throughout the body which can cause pain in different parts of the body.

Sickle cell is hallmarked by different signs and symptoms and many complications ranging from pain, infections, stroke and organ damage with PAIN being the most frequent of the many complications of it. In sickle cell, pain can manifest as soon as the fetal haemoglobin is replaced.

Pain in sickle cell is called a crisis or episode of pain which can range from mild, moderate, and intense. It is often unpredictable because it can happen at any  given time with or without warming trigger signs.

When it comes to describing pain, a sickle cell pain crisis is one of the most difficult to comprehend. Sickle cell warriors describe a pain crisis as an intense, shooting, excruciating, throbbing and a stab-like pain which feels like the joints affected are being stabbed many times without stop. Pain crisis affects different parts of the body, but it mainly affects the arms, legs, back, lower back, stomach, chest and can be in more than one area. An episode of pain can either be mild, moderate, or intense and as most often known it can range from a scale of 1-10 and can last for hours, days, weeks and months.

Triggers Of Pain In Sickle Cell Warriors.

Pain in sickle cell warriors can be triggers by different things depending on how sickle cell affects them. The most common triggers in sickle cell are Stress, Infection, change in weather (exposure to cold, hotness and wind), swimming in cold water, Dehydration, High Altitude, Menstrual Cycle in women and excitement, low HB, low oxygen intake etc.

Managing Pain In Sickle Cell Warriors.

Pain in sickle cell should be taken seriously and considered as an emergency and must be treated urgently. Treatment depends on the intensity of the pain. If mild to moderate, it can be treated with over-the-counter non-steroidal anti-inflammatory pain medicines like Tylenol, ibuprofen, taking plenty of fluids, heat pads, warm bath, keeping warm and diversional therapy (which can be applied both at home and in hospital) to take the mind off the pain such as reading, watching TV, listening to music etc. Most times a warrior can manage a crisis at home but when the pain gets too severe, it’s very important to seek medical attention as soon as possible in order to control the pain and avoid further damage to the affected parts. When in hospital, the doctor will need to give IV fluids as well as IV medicine and may need to prescribe stronger pain medicine called opioids like morphine, pethidine and blood transfusion to replace the sickled red blood cell and increase the HB.

Overtime pain in sickle cell warriors can manifest from acute pain to chronic pain long term. Sickle cell warriors who develop chronic pain should talk to their doctor in order to come up with the right treatment and medicine regime depending on a warrior’s response.

Ways To Prevent Pain In Sickle Cell Warriors.

Sickle cell disease is all about management and knowing what best works for you. It’s important for warriors to be fully educated about it. This will help them to know what triggers their pain and know how best they can avoid them. Warriors can also prevent pain by staying hydrated all the time, avoid stress as much as possible, putting on warm clothing, prevent infections by staying vaccinated, eating healthy, getting enough rest, and most importantly keeping up with their routine medicines and doctor’s appointments.

Pain in sickle cell warriors is one of the most misunderstood and neglected complication of sickle cell disease as it is still not addressed the way it needs to. Most times, sickle cell warriors find it hard to receive the right treatment because they often are not believed to be in pain due to the many misconception people and health personals have on pain and drug administration. Therefore, it is very important for warriors to know their triggers so they can manage them properly as well as prevent some of them. It’s also important for sickle cell warriors to work together with their haematologist /doctors to come up with a care plan to follow and manage the pain whether at home or in hospital and can also help other medical personals know how they can best help during an emergency. Sickle cell warriors and medical personals must work together to address the issues warriors face when accessing help in emergency rooms.