Differences In FOP Patients

Complications differ in FOP patients depending on which part of the body is affected.
FOP can affect all regions of the body which results in difficulty in breathing, eating, speaking, mobility, hearing and the developing of skin problems, kidney stones and pressure sores.
Illnesses and injuries to the body of FOP patients may speed up the development of the disease.

(b) Breathing
As bones grow in the chest and replace the tissue over the ribcage, FOP patients develop breathing problems because of limited chest expansion. This can increase the risk of infection of the sinuses, throat, airways and lungs.
FOP patients develop thoracic insufficiency syndrome (TIS) and features that contribute to TIS include costovertebral malformations with
orthotopic ankylosis of the costovertebral joints; ossification of intercostal muscles, paravertebral muscles, and aponeuroses; and progressive spinal deformity, including kyphoscoliosis or thoracic lordosis. Life-threatening results from TIS are pneumonia and right-sided congestive heart failure. (Kaplan et al, 2005) (36)
The use of an incentive spirometer to minimize respiratory decline is suggested and to prevent pneumonia and influenza the correct immunizations and antibiotics must be taken. Chest physiotherapy is also recommended.
Deep breathing and relaxation exercises, swimming and hydrotherapy, singing and playing a wind instrument are also activities that can lead to better breathing.
(c) Speaking and Eating
When extra bone forms in the jaw joints it causes limited movement and stiffness of the jaw and speaking, eating and swallowing can become difficult.
Difficulty of eating can lead to weight loss and malnutrition.
Food for FOP patients can be cut into small pieces or puréed, but when it is really difficult to eat, high calorie dietary supplements can be taken.

(d) Mobility
As FOP develops and more bone formation occurs, mobility becomes difficult and FOP patients can be bedridden by their early 30’s. They can’t stand upright, sit on their own, balance or walk without difficulty.
Because balancing and coordination is a problem for FOP patients, they can easily fall and got injured.
Stretching of the muscles can cause flare-ups and therefore physical therapy is not the right solution for FOP patients.
Swimming and warm water hydrotherapy is excellent activities that can help with the mobility of FOP patients.
For FOP patients to get around there is canes, crutches, walkers, wheelchairs, power wheelchairs and motorized scooters.

(e)
Hearing
Fifty percent of FOP patients are affected by loss of hearing.
This is normally due to childhood ear infections. Routine hearing tests are recommended. Hearing aids can also be used.
(f) Skin problems
Pressure sores are very common in FOP patients. Because it is difficult to treat pressure sores it is better to prevent it.
Where the extra bones put pressure on the skin, broken and sore skin can develop. Due to their immobility there are areas which are difficult to clean for a FOP patient because they can’t reach it and the skin becomes moist and sweaty and skin sores develop when a bacterial or fungal infection develop.
To prevent skin sores, it is recommended that patients change their position on a regular basis, avoid lying directly on their hipbones, supporting their legs with a pillow underneath the bottom legs when lying on their back, use a pressure-reducing mattress on the bed, use special custom seating and do daily inspections of their skins. A whirlpool bath is also a good idea because it helps to keep the skin clean and naturally remove dead tissue. FOP patients should also wear protective padding over bony
bumps.