Two girls who attended Cobh Community College in Co Cork in the 1980s will meet again on Monday 6th November in the Coral Leisure Centre in Cobh at 2pm. Both have had very different lives. One girl Sonia, became a world champion and an Olympian and the other girl Christine, was unfortunate to develop an invisible lung disease which affects her lungs and her heart. The disease is known as Pulmonary Hypertension (PH).
PH is a very rare disease and very little is known about it. There are about 300 patients in Ireland who suffer from PH. It is often difficult to diagnose as the symptoms (breathlessness, tiredness, dizziness) are often mistaken for more common conditions such as asthma. PH is incurable and many patients require continuous infusion of medication 24 hours per day to facilitate breathing.
Delays in diagnosis are worrying as early diagnosis result in better treatment outcomes. The Pulmonary Hypertension Association of Ireland is constantly trying to raise awareness of PH by informing not only members of the public, but members of the medical profession also. People with PH use the slogan ‘Get Breathless for PH’ – we ask able bodied people and athletes in particular to Get Breathless for PH – because those with the disease are breathless all of the time. Patients often say – ‘Although we are breathless – we are not voiceless’ and are currently campaigning to obtain a medical card for everybody with PH. ‘Being sick in Ireland is very expensive’ says Christine. ‘Some people say it’s like having another mortgage, trying to keep up payments for prescriptions and other consumables which are not re-imbursed. This imposes a dreadful strain on families. For those who use oxygen, the cost of electricity is astronomical and patients need to charge their concentrators. Some patients try to do without the oxygen so that they can save on the cost of electricity. It’s bad enough being sick – but trying to limit the air we inhale really adds insult to injury. We are imploring the politicians to consider patients with PH. It is not considered a Long Term illness and we have to fight for everything ’ says Christine.
Sonia has always held her Cobh roots close to her heart and when Christine asked her to help with an awareness campaign – she immediately agreed to support the cause particularly since November is awareness month for Pulmonary Hypertension. Sonia and members of the Pulmonary Hypertension Association will be in the Coral Leisure Centre in Cobh on Monday 6th November. We have invited all local politicians and counsellors to join us.
Further information from:
Regina Prenderville – 087 637 6563