Living with sickle cell disease

Sickle cell disease is a condition you are born with and that you inherit from your parents. It usually comes with challenges, but you can prevent some of these. Living with sickle cell disease can be overwhelming. In the long term, most people with sickle cell disease will develop some complications.

Patients who take their medicines, eat healthy diets and keep healthy habits can have symptom free periods and delay disease complications for longer.

Living with sickle cell disease can affect different aspects of your life, including causing serious pain, increasing your risks of infections and organ damage. You may have been diagnosed very early in life, but that doesn't mean that you cannot improve your quality of life. Taking your medicines as advised by your healthcare provider, eating a healthy diet and keeping physically active from your early years can make a huge difference.

• Sickle cell disease changes the shape of your red blood cells. This can make your cells clump together and block your arteries. When your arteries cannot carry blood to other parts of your body, you feel pain. The pain can be severe, and you need to see your healthcare provider immediately.
• Living with sickle cell disease increases your risk of having infections and other health conditions such as stroke, eye problems, yellowness of your eyes and kidney problems.
• You may need to visit the hospital often and sometimes be admitted to the hospital. This may make you miss spending time with your friends and miss school or work. It may affect your self-esteem and how you interact with the people around you. You may depend on your pain medicines so much that you feel like taking them when you do not need to.
• Frequent hospital visits may make you miss work and increase how much you spend on medicines and other treatments.

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Keeping your clinic appointments is very important even if you do not fall sick often. By attending your appointment, your healthcare provider can monitor how you are doing and immediately act if there is any problem.

Take your medicines regularly. Your daily dose of medication helps repair and maintain your blood levels and reduce how often you fall sick. This will ensure you remain in school or at work.

Sometimes, your crises are triggered by something. Some common triggers are cold, malaria and not drinking enough water. You can reduce your crises by avoiding these triggers. For example, sleep under mosquito nets and spray insecticides in your room to prevent mosquito bites, wear sweaters during the cold weather and drink at least 8-10 cups of water per day.

From constant pain to frequent hospital admissions, living with sickle cell anaemia is not an easy task. Below are some tips to help you manage your condition and live a productive life.

Eat a balanced meal with plenty of dairy products (e.g. milk, cheese), leafy green vegetables (e.g. efo tete, ugwu) and various kinds of fruits (e.g. apples, oranges), drink enough water and get enough sleep (7-8 hours every night). Stay away from alcohol and smoking because they can worsen your condition. Staying healthy also involves washing your hands regularly with soap to prevent infections.

Keep physically active, at least five days a week doing moderate-intensity exercise. It is important to exercise on most days to keep your body healthy. Keep hydrated as you exercise.

Seek support. Having someone you can talk to while going through your challenges can help you manage better. You may also talk to people who have similar conditions. They are more likely to give you helpful tips. If you feel you may be dependent on your pain medicines, your healthcare provider can help you through counselling and talk therapy.

Treatment for sickle cell disease is usually a combination of diet and medicines. These are often affordable unless there is a need for frequent admissions or when you experience organ damage.

Speak with your healthcare provider about getting a health insurance plan to cover your hospital stays.

Sickle cell disease is a lifelong disease but doesn't have to impact your quality of life seriously. The best way to manage the condition is through diet, prevention of malaria, avoiding your risk factors and keeping physically active. The best way to prevent passing on the disease to your child(ren) is by having children with someone who is not a carrier of the sickle cell gene. A blood test is used to determine this.

There are experimental treatments, but these are often so expensive they are out of reach for most Nigerians.