Information on patient support group
Madam Editor,
Hello, my name is Louise Neylin I’m on the committee of a Patient Support group for people with the conditions Syringomyelia and Chiari.
Which are basically spinal cord problems, some members, like myself are still in good health while others are in quite a lot of pain and have some physical disabilities.
We are only a very small group and we often seem to slip through gaps in help systems. Recently we surveyed members, we had 40 replies and we know of about another 40 people who contact us sometimes.
But there should be about 200 people ? in the whole country We only have contact with two people in the whole of the West, north of Ennis.
If there is anyone in your area that has Chiari Malformation or Syringomyelia they might like to contact us.
Let us know you are there. Email: cmsmirle@gmail.com, or txt 087 7070160.
You don’t have to get involved any more than that if you don’t want to!
We have a meeting in Dublin on October 14th, have a chat with others in a similar position to yourself.
We would be grateful if you could print this letter in order to raise awareness about the group.