In January 1982, John Winks went into hospital for his 7th operation.  Nothing previously had indicated that there might be a problem.  So when he had an MH reaction which proved fatal, his family were devastated.

Mother, Alison, was tested first but proved negative.  Father, Geoff and sister Tracey, went for the test at the same time and were both positive.  They had both had previous operations.  Later that year, having had difficulty making relatives understand the seriousness of the problem, and realising that many professionals did not know about MH, Alison contacted Leeds to see if there was a patient group.  She failed to take the step backwards and hence the BMHA was born.  Letters were sent through Leeds to all known positive families inviting them to join the new group.  Although numbers can never be large as MH is an uncommon problem and some families choose not to become members, the group is still active.  Members receive newsletters, information leaflets, and have the opportunity to attend an annual meeting where expert speakers bring us up to date with MH research and testing.   Here are a few of the early milestones along the way.

September 1983 Original letter/information sheet sent to all known positives.(copies here)
October 1983  First letters of reply and people wanting to join
Summer 1984  First newsletter to members
Spring 1986   Alison attends MH International workshop in York
June 1986   First Members meeting in Leeds
Summer 1987   First foreign translations of Information leaflet
May 1989   First meeting of committee / Suggestion of introducing Regional Representatives
October 1989  Third members meeting - First Annual General Meeting / BMHA computer system purchased
Summer 1990  Hot Line established
September 1990  Alison and Ruth attend MH International Workshop in Munich
January 1992   Charitable status achieved
Summer 1992   Ruth represents BMHA at World Conference in the Hague
July 1993  BMHA Emergency medallions go on sale
March 1994  BMHA Family History medallions introduced

In 1985, seeking some publicity for the group, Alison contacted various newspapers and television companies and the BBC did a piece for their 60 Minutes programme about MH and the setting up of the group.  This video was shown to members at the meeting the following year.The Leeds MH Unit has always given its full support to BMHA and once a committee was formed, members of the Leeds team have always been represented on the committee.

Meetings: We have held Annual Members’ meetings for the past 20 years with a variety of speakers and topics, some of which are:-

Ken Sewell: A hospital patient records officer 
Pat Turner: From the Lions, regarding the work of Medic Alert
Bernadette Sowerby: A Social Worker
Bob Muller  Geneticist
Christine Lavery: From Contact a Family, a group working with rare problems
Mr Brian Collins: Ambulance and emergency services
Dr M Dudley : Consultant from A & E
Dr Alistair Stewart: Director of the Yorks DNA Lab
Leo Mulrooney: Anaesthetist : regarding family responsibility
Gunilla Islander: Anaesthetist and member of the European MH Group from Sweden
Mark Heining: Anaesthetist : regarding future hospital admissions
Patrick Booms: Functional consequences of structural variations in the skeletal muscle calcium release channel geneIn addition, every year, there is always a talk from various members of the Leeds team (Prof. Ellis,  Prof. Hopkins,  Jane Halsall,  Rachel Robinson etc.)  We are very grateful to these people for giving up their time to speak at our meetings.Not only do the meetings give us an opportunity to stay up to date with the work of the MH team, it provides an opportunity for those affected to talk to one another.The Present BMHA is still run entirely by volunteers.  We have no regular income apart from the subscriptions of members, donations and fund raising.  We give several thousand pounds each year to the Leeds Unit for research and, together, we have been successful in obtaining a Lottery Research Grant to look at how many UK families can be helped by a DNA test.  This is ongoing and will be updated on another page.
Elaine Langton  Anaesthetist from New Zealand – who talked about MH in New Zealand and specifically MH and pregrancy

 

 

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