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In the UK, babies receive the pneumococcal vaccine (pneumococcal conjugate vaccine, or PCV) as part of the NHS childhood vaccination programme.   In many cases, a child has received a number of vaccines before they have received the diagnosis of FOP.

The NHS advises that people living with a long-term health condition, may need a single one-off pneumonia vaccine (pneumococcal polysaccharide vaccine, or PPV) or five-yearly vaccination, depending on their condition.  Children at risk of pneumococcal infections can have the PPV vaccine from the age of 2 years onwards.

As with all vaccinations, it is strongly advised to contact an FOP medical specialist before having any vaccinations, to ensure they are necessary and administered in the correct way.

What is pneumonia?

“Pneumonia is one of the most common causes of death in individuals who have FOP.  It is part of the reason for the relatively low median life span of 41 years. (The term median simply means that half of people with FOP die below this age, and half live to be older than this. Individuals with FOP who do not develop life-threatening complications can live to be in their 50s, 60s, and even 70s.).

So what is pneumonia and why is it so dangerous to people with FOP?  Pneumococcal disease is an infection that can attack different parts of the body.  It can infect the lungs, where it causes pneumonia.  It can also invade the bloodstream.  If it reaches the brain, it can cause meningitis.  These are all very serious infections.

People with health problems such as FOP are more susceptible to pneumonia and may have more difficulty fighting the infection.”

What is FOP? A Guidebook for Families’, IFOPA, 2009

Symptoms of pneumonia

(Taken from the NHS Conditions website)

Pneumonia is a swelling or inflammation of the tissue in one or both lungs.  It is usually caused by a bacterial infection.

The symptoms of pneumonia can develop suddenly, or may develop more slowly over a few days.

Common symptoms include:

* A cough

* Difficulty with breathing

* Rapid heartbeat

* High temperature

* Generally feeling unwell

* Sweating and shivering

* Loss of appetite

* Chest pain, which gets worse when breathing or coughing

* There are other less common symptoms including:

* Coughing up blood

* Headaches

* Fatigue

* Joint and muscle pain

If you think you may have pneumonia, seek expert medical advice immediately.

Ensure that any medical professionals involved in your care have access to the ICC FOP Clinical Medical Guidelines.