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Charities & Schools

FD-UK


FD or Familial Dysautonomia (pronounced "Dys-auto-NOmia") is a Jewish genetic disease that affects male and female Jewish babies, primarily causing dysfunction of the autonomic and sensory nervous systems.

 

The autonomic nervous system controls bodily functions which are often taken for granted, such as:

  • Regulation of blood pressure and body temperature
  • Normal swallowing and digestion
  • Ability to respond to stress

Children with FD may have abnormal swallowing causing Lung problems. Sensory abilities are also affected. Children with FD often do not feel pain and may break a bone, or burn themselves, without any awareness of the injury.

 

HOW IS THE DISEASE INHERITED?

It is estimated that one in thirty individuals of Eastern European Jewish ancestry is a carrier of the gene for FD.

All parents of children with FD are carriers of the defectve gene that transmits the disease. The affected child has inherited a double dose of the defective recessive gene, one from the mother and one from the father.

 

FD-UK CHARITY:

Familial Dysautonomia United Kingdom (FDUK) is a UK charity, set up over 40 years ago to help support sufferers of FD and their families.

The charity strives to raise awareness of the condition in the community. Its aim is also to raise money to fund individual medical needs and requirements, as well as pay for specialised doctors to come to London to hold clinics to assess the FD sufferers as well as guide UK doctors in the specialised expertise.

The Society supports medial research and clinical care by:

  • Helping FD children and their families
  • Helping to train UK specialists and therapists in the treatment of dysautonomia
  • Helping to fund research into FD by eminent scientists around the world
  • Bringing the top specialists from abroda to the UK

 

The Society also provides a continual flow of information to members, parents, professionals and anyone requesting medical, educational professional information on FD.

 

Picture 1: FD-UK funds, for example, the vests you see in the picture on the left. This is Cissy who has FD, she uses her vest 2-3 times a day to clear her lungs. These vests give invaluable quality of life to our children and adults with FD and is paid for by FD-UK. The vests we buy, help prevent frequent lung infections and hospitalisation. Please donate to and run for FD-UK and help us change lives.

 

Picture 2: This is Simon Wolfson, aged 45, a training accountant with FD. He received a kidney transplant from his Mum Alexis last summer (2017) after knowing for 5 years, he would eventually need a transplant. Simon's Mum Alexis successfully donated her kidney to Simon in August last year. Simon is the first person with FD to have a kidney transplant in Europe. There have been three FD patient transplanets before, one in New York and one in Israel.

 

Picture 3, 4 and 5: This is Natasha, She is 27 with FD and this is her team of family and carers and 17 boxes of medical equipment and medication to support going on a wonderful summer holiday, on a cruise. Nothing will stop Team Tash! 

 

To find out more go to www.familialdysautonomia.co.uk

 

I WANT TO RUN FOR FD-UK! 

 

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