Fms

Wolfram Syndrome UK (WSUK); the only charity in the UK for this condition. We started in 2010, as the only website associated with WS was a worldwide site. There was no easy to read information available and no real support, as many medical professionals had or still have never heard or come across the syndrome. It was felt the UK required a website where families could find information and support that might be helpful to them.

WSUK became a registered charity in June 2013. We work closely with the 2 hospitals that run the WS clinics in Birmingham and host an annual conference for those affected, their families, support teams, medical professionals and researchers.

WSUK as a national charity help fund research and provide support for those affected by the condition and their families. We feel the more people that know about WS the better; and will endeavour to make sure that hospitals, Doctors and other health care professionals are aware of this site.

Wolfram Syndrome, also called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness), is a rare genetic disorder, causing the four conditions that make up the name, as well as various other possible disorders.

Diabetes Mellitus is the name given when the body cannot convert glucose or sugar to energy, because the pancreas is not making enough of the insulin hormone. Symptoms include thirst, frequent passing of urine and weight loss. Glucose is passed out in the urine and blood tests show a high level of glucose in the blood. This usually needs treatment with insulin injections for life.

Diabetes Insipidus is the name given when the body cannot concentrate the urine because the posterior pituitary gland in the head is not making enough of the vasopressin hormone. Symptoms again include thirst and frequent passing of urine. Urine tests show a very dilute urine. This can be treated by replacing the hormone with a nasal spray or tablets.

Deafness usually means difficulty in hearing in a crowded room, and difficulty hearing high pitched sounds. Some patients are helped with a hearing aid.

Optic Atrophy means death of the optic nerve. Symptoms often present as difficulty seeing in the classroom at school – or everything going grey. There is no treatment for this.

Renal Problems include loss of control over bladder function, so patients may wet the bed or have accidents. Some patients are helped by passing a tube or catheter, passed several times a day.

Neurological Problems may occur; these may include loss of balance, sudden jerks of the muscles, depression and breathing problems. Some of these problems may respond to drugs.

Registered Number 1152445

http://www.wolframsyndrome.co.uk

Mrs Morgan Sinnott

Charity details

Wolfram Syndrome Uk

Wolfram Syndrome, also called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness), is a rare genetic disorder, causing the four conditions that make up the name, as well as various other possible disorders.

Messages of condolence

Service details

Cremation Service

Sewardstone Park Cemetery

Image gallery