Marfan Association UK
Our Mission is to offer support, education and research into Marfan syndrome, ultimately avoiding unnecessary loss of life due to aortic dissection, and facilitating family screening in order to avoid putting other family members at risk, who may have inherited the disorder.
From personal experience we realised patients needed help in diagnosis, necessitating GP referral for eyes, skeleton, heart and lungs. Working with medical specialists across the world since 1984 ensures an up-to-date dossier on Marfan syndrome for ourselves and doctors in the UK , facilitating research projects, patient support and participation in medical seminars.
Emergency help for Marfan syndrome
A diagnosed Marfan patient was away from home and experienced arm, chest and back pain. The person accompanying the patient took her to a local GP who felt she just had flu and needed painkillers.
Her symptoms persisted and she then approached a hospital “walk-in centre” who suggested it would be better if she were driven home (an hour and a half away). They also made contact with her local hospital, which had all the notes relating to her Marfan syndrome.
On the journey home she was in great distress and pain, and symptoms worsened. Tragically, the patient died of an aortic dissection before she could get any help, despite the fact that she was in possession of a Marfan Emergency Card that we issue to all our members to avoid such tragedies.
Sadly this story is not unique, despite the fact that we have been working hard with the medical profession since 1984.
Priorities
- Facilitating diagnosis and saving lives, improving daily living for those with Marfan syndrome
- Availability of genetic tests for family members who may be at risk
- Setting up, sponsoring and participating in research projects, ensuring updated Marfan information is available to all concerned
- Supporting patients, family members, and the medical profession
- Educating professionals and the public via awareness programmes.
Web: www.marfan-association.org.uk
Mrs Diane Rust, Chairman/Support Co-ordinator, Marfan Association UK, Rochester House, 5 Aldershot Road, Fleet, Hampshire, GU51 3NG
Email: marfan@tinyonline.org.uk
Tel: 01252 810472
Fax: 01252 801743
Ans: 01252 617320