Housing Needs of people with sickle cell disease or Thalassaemia Major

1. Dry, clean spacious homes

The housing that is provided for a person with sickle cell disease and Thalassaemia Major should:

  • have adequate space - avoid overcrowding,
  • be un-infested with mice, ants, cockroaches etc.,
  • be dry - free from damp and mildew.

People with sickle cell disease and Thalassaemia Major do not develop effective immunity therefore their bodies cannot fight infection very well. Germs that most people can cope with can be fatal for a person with these conditions.

For example, germs that cause common chest and other respiratory infections can cause a serious or fatal illness in individuals with sickle cell disease and Thalassaemia Major. These types of germs tend to be passed on more readily in overcrowded home environments, especially where there is damp, mildew or fungus. Pneumococcal infections are the major cause of death in people with sickle cell disease, especially young children under the age of five years. Damp and mildew is a major source of chest infection which can lead to sickling in the lungs which can be fatal.

Where there is infestation, there is increased susceptibility to infection. Infection is particularly important during early childhood when an infant is in the oral, crawling, and toddling stage of development. During this stage, children are more likely to pick up objects and put them into their mouths, thereby increasing the likelihood of gastric and other infections. Pests and rodents can also get into food cupboards and become a major source of infection.

2. Warmth

People with sickle cell disease and Thalassaemia Major need homes where:

  • there is adequate heating, i.e. central heating,
  • there are well fitted doors and windows to prevent draughts.

People with sickle cell disease and Thalassaemia Major tend to feel the cold much more than others. This is because they are chronically anaemic and have difficulty maintaining their body heat. Being cold is one of the main factors which trigger a sickle cell crisis. This is because the veins constrict when the body is cold. If you have normal red blood cells that are soft, spongy, and pliable this is not a problem.

A person with sickle cell disease has red blood cells which, even under normal circumstances, change into a crescent half moon shape, become hard and brittle, and have difficulty moving through the narrowed veins, especially when they are cold. The red blood cells stick together, forming long stiff rods which cause a blockage, leading to a severe and excruciating pain called a sickle cell crisis. Depending on the severity of the crisis, the individual may need to go to hospital for strong pain killers to relieve this pain, treat any underlying infections, or for management of other factors which may have caused the crisis.

Ideally, central heating should be provided to ensure adequate overall heating of the home, because going from a warm to a cold environment increases the risk of a sickle cell crisis. Having adequate draught proofing reduces the cost of heating and will enable the family to cope better with the cost of keeping the individual adequately warm.

3. Accessible homes

People with Sickle Cell Disease and Thalassaemia Major should ideally:

  • live on the ground or first floor,
  • but not above the second floor of an apartment or block of flats.

During physical activity, for example climbing stairs, the body needs extra oxygen for the muscles to be able to work properly. The heart beats faster so as to get oxygen from the lungs to the muscles as quickly as possible. If a person is not anaemic and relatively fit, this is not a problem. People with sickle cell disease or Thalassaemia Major have chronic anaemia which limits their red blood cells’ ability to carry oxygen from the lungs to the muscles. The little they do pick up gets taken by the muscles leaving the red blood cell itself deprived of vital oxygen. In this situation for people with sickle cell disease the red blood cell will sickle and may block the veins, leading to a sickle cell crisis.

For those with Thalassaemia Major they will feel very tired and faint.

Climbing stairs is a physical activity that someone with sickle cell disease and Thalassaemia Major may find more demanding than others. The greater the exertion the greater the degree of oxygen shortage, which may result in breathlessness, feeling of physical fatigue and the individual may faint; for those with sickle cell disease this will often trigger a sickle cell crisis. The more stairs the individual has to climb, the more physically demanding this will be, and this increases the chance of becoming ill and hospitalised.

Secondly, if a person with sickle cell disease or Thalassaemia Major need an ambulance in an emergency, which for some individuals can be on a regular basis, the ambulance crew will have great difficulty getting access to clients who are situated above the second floor, especially when the lifts are not working. Lifts in housing estates are not built for stretchers and this can be a problem. If the patient is in extreme pain, or has other life threatening complications, using a carrying chair may be a hazard.

Some individuals with sickle cell disease experience sickle hip pain due to chronic bone infection, erosion of the hip joint and subsequent irreversible damage to the joint, from their early teenage years onwards. This makes mobility, especially climbing stairs, very difficult. Individuals with this problem will need to be situated on the ground floor to prevent further damage to the hip and to enable the client easy access to their home. Others may have spinal complications, which also create mobility problems.

Adequate housing is essential to maintain the quality of the life of those with sickle cell disease and Thalassaemia Major.