What is MEN?
MEN stands for Multiple Endocrine Neoplasia, of which there are three distinct types – MEN1, MEN2 and MEN3. MEN2 was formerly called MEN2a and MEN3 was formerly called MEN2b, and indeed there are similarities between the two.
Multiple Endocrine Neoplasia syndromes are inherited disorders – This means that they can be passed down in families, with each child of an affected parent having a 1 in 2 or 50% risk of inheritance.
MEN disorders cause more than one gland of the body’s endocrine (gland) system to develop growths (tumours). The affected glands then produce abnormally increased amounts of hormones, the body’s chemical messengers, which in turn cause a variety of different symptoms.
Each growth may occur alone or independently of MEN and are here referred to as associated endocrine growths.
A person may have a gene change that causes MEN but not yet have developed any of the growths and they are then known as a “MEN carrier” and should be offered regular tests and follow-up appointments at an endocrine clinic in the same way as a patient who already has MEN growths.
In many people (although not all) the gene change may be identified by genetic testing, but this should be done after specialist genetic counselling. Genetic testing and counselling services are available on referral from your doctor or specialist.
Other endocrine growths
AMEND also offers support, information and contact with other patients with the following sporadic (non-genetic) or familial (genetic) growths:
- adrenal gland growths (phaeochromocytomas)
- medullary thyroid cancer (MTC)
- parathyroid hyperplasia
- Familial isolated pituitary adenoma (FIPA)
- SDH disorders
Author: Jo Grey, AMEND CEO, with the help of the AMEND Medical Advisory Team