Newsletter February 2023

Celebrating Rare Disease Day

We are Many – We are Strong – We are Proud

Having something wrong with you, feeling ill, facing a difficult prognosis is difficult enough for both patients and carers. When you, or your doctors/ specialists don’t know what is wrong or have little idea of a prognosis, that seems to make the situation much worse. There is a tendency to feel isolated with no one who seemingly understands or can help. This can lead to a feeling of helplessness, of weakness, in the face of diversity. It is also possible that we can feel embarrassed about what is happening to us, the ‘why me?’ question, or confronted with our inability to cope, or even just wanting to avoid explaining again and again what’s wrong with you……

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