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Local Grandmother Is Running The London Marathon


  • Author: Angela Fisher
  • Published: 30th January 2018
  • Categories: Blog, Clanfield

Local Grandmother Is Running The London Marathon

http://www.runningforsticklersyndrome.wordpress.com


I'm running the London Marathon in April at the aged of 57 (I’ll be 58 in May).  My husband and I moved from Guildford to Clanfield 3 years ago. I'm raising funds for The Stickler Syndrome Support Group.

I've seen Stickler Syndrome affect 4 generations of my family, the latest being my youngest granddaughter Phoebe who is a twin. Her twin brother does not have the syndrome.

Stickler Syndrome is a relatively rare hereditary genetic condition that can affect the hearing, vision and joints. A person diagnosed with the syndrome has a 1 in 2 (50%) chance of passing the condition on through any children they might have. I have 2 daughters with the condition - one has 4 children who seem unaffected and the other has twins, one of whom has inherited it.

 Stickler Syndrome is not a life limiting condition but living with it can make everyday life a struggle. Simple tasks like preparing food, reading recipes, crossing the road, even watching television can be problematic. Sometimes it's hard to hear what people are saying, you might not hear the doorbell ring, you might not hear your child crying or someone calling your name. An affected person learns to live with these issues, but the threat of a detached retina is constant and a detached retina can lead to blindness if not treated urgently.

 The Stickler Syndrome Support Group, also known as Stickler Syndrome UK, (www.stickler.org.uk) aims to raise awareness of the syndrome amongst medical professionals and the general public. Early diagnosis is crucial so that people are able to access the best possible care for their condition. The group aims to update members with the latest medical research into the condition and puts members in touch with each other in an effort to alleviate feelings of loneliness and isolation after a diagnosis. It's often enough just to talk about your worries with someone who understands or who is going through a similar situation. I have been a member for over 30 years now and I feel it's time to give something back.

 I have a blog which I update weekly, the details of which are at the top of this article and I have a page for any sponsorship and donations:

www.justgiving.com/nannyfishruns

 I'm running this marathon for two of my daughters, for Phoebe my youngest granddaughter and for everyone who lives with this condition every day.

 


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