News/Research

Marfans Syndrome Open Day 10th of October 2009

A letter from Petronella Canty, Chairperson, Marfan Syndrome Support Group

Open Information Day: Three of us from the Committee arrived from both Cork and Dublin around 12.30 p.m. and after checking in went for lunch in the hotel retaurant. Afterwards we leisurely trotted off to the the meeting room around 2p.m. thinking there was no mad rush, only to find people waiting at the door!!!! We met some lovely people. The people that were waiting for us, were a whole family from near Castlebar. Imagine everyone in the family is affected, wife, children and grandchildren, the only one not affected was the father. Sadly his wife died from aortic disection a few years ago, and it was only then that Marfan Syndrome was mentioned. All four children have Marfan in varying degrees, and are being very closely monitored. Both grandchildren (who also came along) also have it. To be honest the minute they walked in, they were like a walking advert for Marfan Syndrome. They must have stayed about 2 hours having a lovely chat about all they have been through and enquiring about things that concerned them. We also had the pleasure of meeting another woman and her daughter. This family was the type you really felt having an info day was for. Her brother had died from aotic disection 4 years ago, yet even though they said it was caused by him having Marfan Syndrome, the doctors never once mentioned the rest of the family being checked. This was only 4 years ago!!! I hope now after us talking with them, that they will push their G.P. to get checked by a specialist who knows about Marfan Syndrome. Again both of them stayed for over an hour, chatting with us, Caroline Boyle ( a long time member of our committee) and our other visitors I think because it was not only us, but others local to the area that was present, made the atmosphere so pleasant. It was a bit like a coffee morning rather than anything serious, all we needed was a few couches and we would have been really relaxed. I certainly think it was well worth the effort, and I hope those we met will feel the benefit. Now that we have more contacts in this area we might see more getting in touch with us for information and support, and we came away feeling that we would like to come back again to this area in the future.

Regards to all
Petronella Canty Chairperson Marfan Syndrome Support Group

 

Marfan syndrome: the silent disease (July 09) (Extract from www.eurordis.org)
LEARNING FROM EACH OTHER: Marfan syndrome: the silent disease

Véronique Vrinds was not just taller than her friends at school; she was also a bit more awkward and much more prone to sprains. While growing up, she developed back pain, her thorax was larger than normal and she tired easily. “But my mother had the same health problems and so we all blamed our height and learned to live with that,” says Véronique Vrinds, a mother of two, who lives in Belgium.
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