Rare Endocrinology News

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Alström syndrome

Alström syndrome is a very rare autosomal recessive genetic disorder characterized by childhood obesity and multiple organ dysfunction

Prevalence

1-9 / 1,000,000

331-2,979

US Estimated

513-4,622

Europe Estimated

Age of Onset

ICD-10

E34.8

Inheritance

Autosomal dominant

Autosomal recessive

Mitochondrial/Multigenic

X-linked dominant

X-linked recessive

5 Facts you should know

FACT

1

Characterized by childhood obesity and multiple organ dysfunction

 

FACT

2

Symptoms include early-onset type 2 diabetes, cone-rod dystrophy resulting in blindness, sensorineural hearing loss and dilated cardiomyopathy

 

FACT

3

Endocrine disorders typically also occur, such as hypergonadotro-phic, hypogonadism, and hypothyroidism

 

 

 

FACT

4

Prognosis varies depending on the specific combination of symptoms, but individuals with Alström syndrome rarely live beyond 50

 

FACT

5

Alström syndrome is caused by mutations in the ALMS1 gene

 

Alström syndrome is also known as...

Alström syndrome is also known as:

  • ALMS
  • ALSS
  • Alstrom's syndrome
     

What’s your Rare IQ?

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Common signs & symptoms

Vision abnormalities; specifically cone-rod dystrophy and cataracts

Progressive sensorineural hearing loss in both ears and chronic infection or inflammation of the middle ear

Heart disease that enlarges and weakens the heart muscle (dilated cardiomyopathy)

Excessive eating (hyperphagia) and rapid weight gain leading to obesity

Insulin resistance leading to high levels of insulin in the blood (hyperinsulinemia) and type 2 diabetes mellitus

Elevated levels of fats (lipids) in the blood (hyperlipidemia)

Short stature

Skin findings including abnormally increased coloration and “velvety” thickening of the skin in certain areas of the body (acanthosis nigricans)

Current treatments

There is no specific treatment for Alström syndrome. Treatment is focused on managing the symptoms present in each individual. This may involve a team of specialists including but not limited to: pediatricians, cardiologists, audiologists (hearing specialists), ophthalmologists, endocrinologists, and orthopaedists. Treatment may include:

Specially-tinted, prescription glasses and vision aids to assist with vision loss

Hearing aids and cochlear implants for hearing loss

Dietary measures, exercise programs, and oral medications and/or insulin to control diabetes

ACE inhibitors and other medications to manage heart and kidney problems with some individuals requiring a kidney or heart transplant

Hormone therapy if the male testes or female ovaries produce lower than average levels

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