Sickle Cell Disease - Lifestyle Changes

Relief for Mild Pain

For mild pain relief, common medications such as acetaminophen (Tylenol) or the class of drugs known as nonsteroidal anti-inflammatory drugs (NSAIDs) are often sufficient. Aspirin is the most common NSAID, but there are many others, including ibuprofen (Advil, Motrin) and naproxen (Naprosyn, Aleve). Aspirin is not usually recommended for children because it can aggravate abdominal pain.

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Managing the Emotional and Social Impact

In assessing the seriousness of this disease, no one should underestimate its emotional and social impact. For the family, there is nothing more heartbreaking than to watch their child endure extreme pain and life-threatening medical conditions. The patient endures not only the pain itself but also the emotional strain from unpredictable bouts of pain, fear of death, and lost time and social isolation at school and work. Academic grades among patients average less than C, even in children with a low frequency of hospitalization (averaging 17 days a year).

These problems continue over the years, and both children and adults with sickle cell disease often suffer from depression. The financial costs of medical treatments combined with lost work can be very burdensome.

Any chronic illness places stress on the patient and family, but sickle cell patients and caregivers often face great obstacles in finding psychological support for the disease. Communities in which many sickle cell patients live generally lack services that can meet their needs, and professionals who work in their medical facilities are often overworked. In a study comparing patients with different kinds of long-term illnesses, those with sickle cell disease gave the lowest scores to their doctors and other professional caregivers for compassion and satisfaction with medical care.

It is very important for patients and their caregivers to find emotional and psychological support. No one should or can endure this life-long disease alone. Unfortunately, studies indicate that most patients do not receive even basic supportive care that could help reduce the anxiety and intensity of pain that occurs when a sickle cell crisis erupts.

The following are some measures that some people find helpful in dealing with this disease.

Stress Reduction. Stress reduction techniques and relaxation methods appear to be helpful. Those that use breathing and mediation techniques may be very helpful.
Cognitive-Behavioral Therapy. Studies suggest that cognitive behavioral therapies that teach coping skills can result in less negative thinking and even less pain. Coping skills refer to the patient's ability to respond to symptoms, such as pain. Some patients cope best with many active efforts (keeping warm, replacing fluids) after taking pain medication. Other preferred withdrawing and resting until the medication became effective.
On-Line Support Help. Computer on-line services are now valuable sources of support groups and access to research. They are particularly valuable for patients who cannot easily leave home or for patients who are ill. Computers and the monthly charges for on-line services are still costly, however.
Support Associations. Parent and professional support associations still offer the best and least expensive sources of help.

Other factors that are important are those that help maintain positive attitudes, including spirituality, humor, or having important life goals (children, jobs, etc).