Sickle cell disease (SCD), a genetic haematological disorder, results from the mutation of red blood cells into stiff and deformed sickle-shaped blood cells. It happens due to a rare mutant variant of the HBB gene in humans, more commonly observed in children. These cells are malformed and die prematurely, leading to a condition called Sickle Cell Anaemia (SCA), a severe form of SCD. People suffering from SCD often report restless sleep, insomnia, body aches, cramps and constant breathlessness.
In children and teenagers, sickle cell disease can hinder growth, disrupt sleep cycle, impaired nerves, and cause intense pain from VOC and tissue injuries. Proper rest is crucial in order for a body to heal, but with the circadian rhythm of the body disturbed, there barely is a chance to recover. Let’s take a glimpse into what causes such pain in SCD, how it affects children’s sleep and what can be done to help.
Why is Sickle Cell Disease So Painful?
Sickle cell pain is primarily caused by mutation of healthy erythrocytes, aka, red blood cells (RBCs) into crescent-shaped sickle cells. These cells are incapable of carrying oxygen and nutrients unlike regular erythrocytes, causing cell and tissue death in organs. The sickle cells break down and clump together, blocking blood vessels and capillaries, cutting off blood supply and resulting in painful Vaso-Occlusive Crises (VOC), a characteristic condition of SCD.
During sleep the metabolism of a body slows down, which means lesser blood flow than usual. In such conditions the inflammation, cramps and nervous impairment caused by VOC are further worsened, and the sudden haemolysis (breakdown of blood cells) in sickle cells brings an onset of severe anaemia. Any stress, illness, or dehydration will exacerbate the condition and trigger body aches.
Children with SCD have a harder time falling into REM sleep and staying asleep for long. The sleep deprivation doesn’t let their body heal like a healthy child’s would, and they’re stuck in a loop of constant pain and fatigue. Some even develop sleep apnea or restless leg syndrome
Possible Ways to Treat SCD Pain
If you’re wondering whether there’s any cure for sickle cell disease, the answer would be— ‘not really’. Over the many years, radiotherapy and bone-marrow transplant have developed significantly in the search to find a permanent cure for SCD, but unfortunately, they are either less likely to succeed or are just temporary.
However, there are still ways to help manage sickle cell pain, like:
- Routine Check-Ups: With an abnormal blood condition like sickle cell, scheduled screening becomes a necessity to check for organ damage and monitor blood levels. It makes it easier to prescribe meds or decide on surgery when required.
- Pain Medication: Over the counter pain meds are not always effective or safe for treating sickle cell pain and VOC. You may need specific ones prescribed by a doctor, for regulating the blood flow, ease the pain and induce sleep.
- Nutrition and Supplements: Due to the pre-mature death of blood-cells, the body often doesn’t get enough nutrition to heal. It’s important to maintain a strict, fulfilling diet almost every day and take supplements to bridge in the gaps.
- Good Sleeping Habits: Even when feeling insomniac and restless, one needs sound sleep, regularly and at the same time for proper recovery. Make sure the bedroom environment is as comfortable as possible, and ask your doctor to prescribe meds to aid with sleep.
- Specialized Care: Despite all the advances made in the treatment of sickle cell disease, most of them are still underdeveloped. Sometimes, it’s just not enough, and may require frequent hospitalization and specialized treatment to deal with the complications that may arise.
These are just a few ways to keep sickle cell pain in check. Surprisingly, many are yet to be aware of them due to media ignorance. But we can help resolve the problem by spreading awareness and providing support for sickle cell disease.
What You Can Do to Support Sickle Cell Patients?
If you want to help out sickle cell patients in need and make healthcare available for everyone, here’s what you can do:
- Donate and Fundraise: Charities and Research Institutes around the world are always in need of funds to help people suffering from SCD. You can choose to donate blood to such organizations or a blood donation camp, and fundraise through campaigns to help them financially.
- Local Support Groups: You may choose to join a local sickle cell support group or start one in your own area to support more people with SCD, supply them with necessary meds and help parents get in contact with the nearest sickle cell foundation.
- Wellness Programs: Participate and volunteer in wellness programs for sickle cell patients, meant to educate more people on sickle cell disease and ways to combat it. Maintain fitness routines and help others get used to it, so that everyone can feel comfortable working-out for a healthier lifestyle.
The Children’s Sickle Cell Foundation strives to reach out to every family, extending help to those who need them, empowering the children suffering from sickle cell disease, educating everyone on how their support can be life-changing for someone else. You can get in contact with them if you’ve decided to take the step.
