The story of Margaret
What test you might ask? My twin ann has posted some of our story here. It is important for me, the other twin to add to it. The test I speak of is ….the liveable test! Can you LIVE in Ireland with a rare disease? My answer is ‘barely’ . Just about. Clinging to the edge of the cliff more like it! It’s not unusual for patients with rare diseases to be dismissed, ignored, judged or blamed. Especially if you look ….er…’normal’.
At 62 I thought I would be resting in retirement, peace, after years of protecting disabled children from abuse. Then I developed Parkinson’s disease, but it did not go the route of ‘ordinary’ Parkinson’s . I started not to be able to walk, a weakness, not festination , which is a Parkinson’s walk. No, weak, not able to stand, or walk. Then excruciating fatigue. Want to sleep forever. Then heart/ blood pressure mysteries. As ann said, now we are being investigated in Newcastle royal infirmary UK ; Where they are struggling to find the root cause, though they’ve identified objective defects. So not ‘all in the mind’. They tell us we Will be RARE! Ireland’s doctors, primary care teams fail to understand the struggles we have. And a disease with ‘no name’ means ‘ no services, no support’ despite the rare diseases charter launched in a blaze of publicity last year by our minister for health, it means nothing for us twins, in co Wicklow, Ireland. To live partly means to be mobile and active. One basic human right is to have appropriate wheelchairs if you deviate from standard and cannot walk. But not in Ireland . We tried to raise funds from public support, but we are NOT cute 5 year olds in pigtails and pink ribbons. We are ‘oldies’ – not the same emotional appeal.
Ireland fails the test….we are spunky twins, we challenge the system, we go on radio, TV, to newspapers. We are campaigners for justice – for wheelchairs… For those with rare diseases, But crying every morning just for the right to LIVE, is exhausting. Rare diseases day is SO important. We will gather into our hearts, YOU, as family, and we will hope a ‘liveable’ life can be your lot – a rare disease does not have to lead too misery! We can’t get rid of the disease, and it may bring it’s physical suffering, but support, care , services, with compassion…makes a difference.