Coping with sickle cell disease at home

Any chronic condition that requires ongoing attention is stressful and can cause bouts of anxiety. When so much can go wrong so quickly, it is only human to be emotionally affected by a condition such as sickle cell disease. It can often feel as though your body is working against you, constantly.

There are things that you can do to improve your own quality of life:

• Maintain a healthy diet: It goes without saying, but what you put into your body influences your overall health. And it can go either way – improve your condition or make you unwell. An important consideration when it comes to your diet is folic acid. RBCs require a healthy dose of folic acid and other nutrients in order to stimulate production needed to consistently replenish the body. Your bone marrow needs folic acid in order to help with this process. Supplements, a variety of colourful fruits and veggies, and whole grains may become staples in your household.
• Keep hydrated: In addition to a nutritious diet you will also need plenty of fresh drinking water. People with SCD typically dehydrate easily, particularly when experiencing a crisis. It is strongly advisable to drink plenty of water throughout the day, and especially when exercising or travelling to destinations where the climate is hot and dry. Avoid alcohol consumption which can also cause you to easily dehydrate. Remaining hydrated is of the utmost importance if you have sickle cell disease as this slows the sickling process and helps to alleviate pain.
• Get moving: Exercise is good for you, but be mindful of overdoing it. Strenuous exercise can also cause dehydration, so ensure that you stay well hydrated when exercising and rest when your body is tired. You may need to take care with exercises that involve a change in body temperature, such as swimming. Changes in temperature can trigger your RBCs to sickle. Your doctor can advise on how much exercise may be good for you and how frequently you should engage in the activity. Too much of a good thing won’t help you in this instance. On the plus side, if your condition is a major source of stress for you, exercise will help alleviate this.
• Extreme heat or cold: Locations that experience extreme weather changes may not be good for a person with SCD. Exposure has been noted to increase risk for frequent crisis scenarios. Wherever possible, it may be recommended that you avoid these locations in the world. As mentioned, temperature changes can cause RBCs to sickle, so it is often easier to dress in layers which allow you to manage warming up when it is cold and cooling down in higher temperatures.
• Take care with medications: Over-the-counter medications also have side-effects and it is strongly advisable that you are cautious about what you take to help alleviate pain symptoms. Many can potentially have adverse effects on your kidneys. Check in with your medical doctor before taking anything other than what he or she has prescribed for you.
• Learn to manage your pain: Heating pads, massages, physical therapy and hot baths are some methods that can effectively reduce the effects of chronic pain in the body. Your pain management specialist is the best person to advise on techniques that will be most effective for you.
• Look after yourself: Go for routine eye exams and necessary vaccinations to prevent infections. Refrain from smoking or being in places where you are exposed to second-hand smoke as this will effectively reduce the amount of oxygen in your bloodstream. When you are tired, rest. Plenty of sleep can help to reduce symptoms of fatigue.
• Take care when it comes to air travel and high altitudes: The higher you go, the less oxygen. A lack of oxygen will cause RBCs to sickle and deform. If you are going to be exposed to high altitudes or travelling in an unpressurised airplane (or pressurised plane), plenty of water is necessary to help prevent dehydration. Shorter air travel times (4 to 6 hours) aren’t too problematic, as long as plenty of water is consumed.
• Seek support: Counselling can be beneficial for those suffering the disease, as well as for those around them (family in particular). Support groups for families are a good way to approach challenges, and receive assistance and learning tools that can help you cope emotionally.
• Be in-the-know, at all times: Ask questions. Try not to let this disease scare you. It is a serious condition, and as such must be taken seriously. But the more you learn about it, the more you will know. As you learn, the better you will be able to cope with and manage your condition. There is no ‘stupid question’. Your medical care team is there to assist you through everything and help you cope as best as is humanly possible every day.

Top tips for helping your child if he/she is diagnosed with sickle cell disease

Common symptoms of SCD will have an impact on a child’s daily functions and activities. It’s one thing to be able to control certain things that will have an impact in the home, it’s another challenge altogether when a child needs to go to school and interact socially (in environments not within your control).

Ways you can help manage the special needs your child will have at school include:

• Making your child’s teacher/s aware of how his or her condition will affect learning: Educating others who interact with your child about their condition can also help them, help your little one. Your child may frequently require time off from school because of the discomfort of their symptoms. As a result, they may fall behind their classmates. This can be foreseen in the sense that both sides can be more accommodating in helping a child keep up with their peers when they are well enough again. Extra tutoring classes may be required.
• Helping teachers/s and other school employees understand the nature of SCD symptoms: As part of the treatment and SCD management plan, children need to consume a considerable amount of water every day. This may mean that a child may need to use the bathroom more frequently than many of the other children. A teacher will need to be aware of this and the reasons why so as to be more accommodating, especially if the need to use the bathroom disrupts a normal classroom session. Helping teachers to understand the full spectrum of signs and symptoms is also highly beneficial. There may be times a crisis happens and a child will need urgent medical care. Recognising these types of signs can make all the difference. It is a good idea to perhaps have the signs written down, which school employees and teachers can easily reference if they notice that something about the child seems different, as well as who to call if there is an emergency situation.