Marfan Syndrome awareness film
A MAN suffering from a little-known genetic condition is hoping a new film about his life will educate medical experts and the public.
The film, called Just Growing Pains, has premiered at the Whitgift Film Theatre. It explores the endless operations sufferers such as Cleethorpes man Leslie Vince, MBE, go through.
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From left, Leslie Vince, Nigel Dunwell, Aaron Naveran, Steven Vince, Jenni Vince, Jim Vince, Dr Michael Carr, seated, from left Alan Broodryk, with Stuart Hall of Hallway Media and Laura Gray
It also highlights the potentially deadly consequences of having the condition.
Marfan Syndrome has a degenerative effect on the body's connective tissues. It affects the eyes, heart, bones and muscles.
With regular screening and treatment, a person who has the syndrome can increase their life span.
At 56, Leslie is one of the oldest people in the country to have it.
He said: "I thought the audience had just the reaction we wanted, and laughed at the lighter moments.
"My thoughts, when I watch the film myself, go to my eldest brother and mother, who both passed away from the condition.
"At the time, we didn't know about Marfan."
He said the making of the film and the impending release of the DVD to inform and raise money for the Marfan cause was timely.
He said: "At the end of the year, Jen and I are going to stop our fundraising, because I have had 50-odd operations and it is becoming too difficult to do it."
His wife Jenni said: "I didn't realised until the documentary was being made that Les was one of the oldest in the country with the condition – that scared me a bit.
"I thought the quality of the film was excellent."
She said the way producers Stuart Hall and Laura kept on with the film despite facing trouble funding it during the recession was "marvellous".
Alan Broodwyk, of Nottingham City Hospital, said: "I have been Leslie's surgeon for 15 years.
"I think this film is crucial, because as a medical student, one may learn about a lot of rare medical conditions, but this is a more frequent condition, and deadly if ignored."
Stuart said: "I was really pleased with the reaction. When we were interviewing the Gash family in Sunderland for the film – who lost their son because of the condition – we did think about how we were going to get it across without filling people with fear."
It will broadcast on Sky's Community Channel Sky (539), Virgin Media (233) or Freeview (87), tomorrow at 9pm.
Anyone wishing to buy the DVD can call (01472) 290229.
2 Comments
by Feeby04
Sunday, October 23 2011, 12:39AM
“Is this DVD still available, I live in Australia, but would love a copy. If someone can let me know if its available and how to get a copy that would be great.
Thanks
Fiona”
by Geraldine Marshall, West Midlands
Thursday, September 24 2009, 7:14PM
“Leslie took the time to chat with me today when I called to order the DVD. My daughter has been diagnosed with connective tissue disease and we are awaiting further clarification to see if it is Marfans.
It's the hard work of people such as Les and his wife I can't thank enough. CTD can be very isolating and scary at times. there are some days our day is full of dread for our daughter's future - but we do try and stay positive and proactive to ensure our daughter and other sufferers get the support and help they need. Early diagnosis and prevention is the key so money for research is essential. Education is also very important - just to take the time to understand and make yourself aware of how CTD's such as Marfans can affect individuals, their family and friends. There is presently no cure so donations are essential in finding prevention and cure.
To donate please contact: http://www.marfantrust.org/
And thank you Les - your hard work and spirit is a true inspiration
The Marshall family
Birmingham”