Also during the first few weeks of life, it becomes evident that the baby has an intense dislike of bright lights (photophobia) and the babies eyes appear to wobble (nystagmus). Children affected by Alström Syndrome may have progressive sight loss.

Babies and young children may gain weight quickly and obesity is a great problem. (Early blood tests may show that the child has high insulin levels, hyperinsulinemia). A large percentage of children develop Diabetes Type Two and should be regularly checked for this.

Hearing loss can occur at any age so it is important to have your child’s hearing checked regularly.

Urological problems can develop in the teenage years which cause urinary retention and/or incontinence overflow. The symptoms may be hard to spot at first but severe abdominal pain and soreness around the genitals would be early signs as well as infrequency in visiting the loo.

Alström Syndrome is wide ranging and may also cause a number of other problems affecting the liver, kidneys and cause gastrointestinal problems.

However, it is important to realise that not everyone will get all of these problems. Even in the same family where two children are affected the symptoms can vary widely. It is wise to be aware of the possible problems so that early signs and symptoms can be spotted and early treatments sought. The AS medical screening clinics help to monitor the health of patients and the medical experts can diagnose any problems early. ASUK can refer you to these clinics which are held in Birmingham.

With proper management through diets, exercise and medication those affected by Alström Syndrome can have a good quality of life. ASUK is here to support you every step of the way, so please get in touch we would love to hear from you.