Condition Management | Wolfram Syndrome

Wolfram Syndrome Resources

Take a look at our useful resources to help those with Wolfram Syndrome and their families.

What is Wolfram Syndrome?

Wolfram Syndrome is a rare genetic condition leading to late childhood blindness (optic atrophy), diabetes mellitus, diabetes insipidus and deafness, along with other difficulties such as renal and neurological problems. Not all these symptoms are necessarily present in those diagnosed with Wolfram Syndrome, and each one can vary in severity and onset.

Wolfram Syndrome affects about 1 in 770,000 of the total UK population or 1 in 500,000 children, so it is very rare. A consultant paediatrician may only see one affected child in a professional lifetime. There is a lack of local medical knowledge about the condition and how best to manage it. This often results in late diagnosis, a lack of standardised medical care, and can make school life and education difficult for affected children.

Wolfram Syndrome Infographic
  • Optic Atrophy essentially means that the optic nerve stops working. Symptoms can often present as difficulty seeing in the classroom at school – or everything going grey. There is currently no treatment for this. Vision problems may be improved with the use of glasses.
  • 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 an enhanced 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. It can be managed by insulin injections/insulin pump, blood glucose monitoring and healthy eating.
  • 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 an enhanced 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. In some cases cochlear implants can be a possibility.
  • 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.

Find out more about Wolfram Syndrome and the Main characteristics here >> (PDF)

Wolfram Syndrome Resources

Wolfram News

Every quarter we send a Wolfram Syndrome newsletter to our email subscribers. If you missed them, you can check out our latest newsletters below.

Spring 2020 Wolfram Syndrome News

Summer 2019 Wolfram Syndrome News

Spring 2019 Wolfram Syndrome News

Winter 2018 Wolfram Syndrome News

We also have audio recordings of these newsletters available. Please email if you would like to receive a copy of these.

Understanding Wolfram Syndrome

Our useful information leaflets and audios are available in both English and Urdu.

This work was funded by a grant from Breaking down Barriers which is funded by The Sylvia Adams Charitable Trust.

You can also listen to information about Wolfram Syndrome via the following recordings. These are available in both Urdu and English.

We also have a useful guide for schools who are supporting a pupil with Wolfram Syndrome.

Breaking Down Barriers logo

With thanks to Breaking Down Barriers and The Sylvia Adams Charitable Trust

First uploaded 23 July 2021

Next review due November 2021

Visit our Wolfram Syndrome Support page >>